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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
KEYWORDS
Advance directives - life-sustaining medical treatment - advance refusal o f life
sustaining medical treatment - withholding of treatment - withdrawal of treatment
living will - contemporaneous refusal of medical treatment - autonomy - right to
self-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 about
managing their future, including making decisions about the medical treatment they
may wish to receive or refuse if they lose decision-making capacity. To date, there
has been relatively little research into the extent to which legal regulation allows
competent adults to make advance refusals of life-sustaining medical treatment that
will bind health professionals and others when a decision needs to be made at a
future time.
This thesis aims to fill this gap in the research by presenting the results of research
into the legal regulation of advance directives that refuse life-sustaining medical
treatment. In the five papers that comprise this thesis, the law that governs this area
is examined, and the ethical principle of autonomy is used to critically evaluate that
law.
The principal finding of this research is that the current scheme of regulation is
ineffective to adequately promote the right of a competent adult to make binding
advance directives about refusal of medical treatment. The research concludes that
legislation should be enacted to enable individuals to complete an advance directive,
only imposing restrictions to the extent that this is necessary to promote individual
autonomy.
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 that
principle is an appropriate one to underpin regulation.1 The finding of the research is
that 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 a
principle that has been even more prominent within the discipline of medical ethics;
and it is the principle which underpins the legal regulation of a related topic, namely
the contemporaneous refusal of medical treatment .
1 Lindy Willmott, Ben White and Ben Mathews, 'Law, autonomy and advance directives' (2010) 18 Journal of Law and Medicine 366 (reproduced in chapter 3) .
11
Next, the thesis reviews the common law to determine whether it effectively achieves
the goal of promoting autonomy by allowing a competent adult to make an advance
directive refusing treatment that will operate if he or she later loses decision-making
capacity. 2 This research finds that conunon law doctrine, as espoused by the
judiciary, prioritises individual choice by recognising valid advance directives that
refuse treatment as binding. However, the research also concludes that the common
law, as applied by the judiciary in some cases, may not be effective to promote
individual autonomy, as there have been a number of circumstances where advance
directives that refuse treatment have not been followed.
The thesis then examines the statutory regimes in Australia that regulate advance
directives, with a focus on the regulation of advance refusals of life-sustaining
medical treatment. 3 This review commences with an examination of parliamentary
debates to establish why legislation was thought to be necessary. It then provides a
detailed review of all of the statutory regimes, the extent to which the legislation
regulates the form of advance directives, and the circumstances in which they can be
completed, will operate and can be ignored by medical professionals. The research
finds that legislation was enacted mainly to clarify the common law and bring a level
of certainty to the field. Legislative regimes were thought to provide medical
professionals with the assurance that compliance with an advance directive that
refuses life-sustaining medical treatment will not expose them to legal sanction.
However, the research also finds that the legislation places so many restrictions on
when an advance directive refusing treatment can be made, or will operate, that they
have not been successful in promoting individual autonomy.
2 Lindy Willmott, 'Advance directives refusing 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 Journal of Law Reform 287 (reproduced in chapter 5); and Lindy Willmott, Ben White and Michelle Howard, 'Refusing 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 Ho ward, 'Refusing advance refusals: Advance directives and life-sustaining medical treatment' , above n 2; and Lindy Willmott, 'Advance directives and the promotion of autonomy: A comparative Australian statutory analysis' (20 1 0) 1 7 Journal of Law and Medicine 556 (reproduced in chapter 7).
111
Original and significant contributions to knowledge
The five papers compnsmg this thesis make seven original and significant
contributions to knowledge within the discipline of law.
1. The thesis comprehensively identifies and reviews all of the publicly
available common law decisions in Australia and England that adjudicate on
advance directives that refuse life-sustaining medical treatment. Such a
review has not before been undertaken.
2 . The cases that are identified are critiqued through close legal analysis of the
reasoning used and principles applied.
3. A theoretical evaluation is then undertaken by assessmg whether the
approach taken by the judiciary as examined through the legal critique 1s
consistent with the principle of autonomy.
4. The thesis also reviews, for the first time, all of the parliamentary debates in
Australian jurisdictions where such debate preceded the enactment of
legislation.
5 . The thesis also examines all Australian legislation in detail, explaining how
the statutes regulate advance directives that refuse life-sustaining medical
treatment.
6 . Features of a legislative framework that are necessary to promote individual
autonomy 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) provide
the groundwork for the final original and significant contribution: a critique
of the legislation using the benchmark of autonomy.
lV
LIST OF PUBLICATIONS
1 . Lindy Willmott, Ben White and Ben Mathews, ' Law, autonomy and advance directives ' (201 0) 1 8 Journal of Law and Medicine 366 - 389
2. Lindy Willmott, 'Advance directives refusing treatment as an expression of autonomy: Do the courts practise what they preach? ' (2009) 38(4) Common Law World Review 295 - 34 1
3. Lindy Willmott, 'Advance directives to withhold life-sustaining medical treatment : Eroding autonomy through statutory reform' (2007) 1 0 Flinders Journal of Law Reform 287 - 31 4
4. Lindy Willmott, Ben White and Michelle Howard, 'Refusing advance refusals: Advance directives and life-sustaining medical treatment' (2006) 30 Melbourne University Law Review 2 1 1 - 243
5. Lindy Willmott, 'Advance directives and the promotion of autonomy: A comparative Australian statutory analysis' (20 1 0) 1 7 Journal of Law and Medicine 556 - 5 8 1
V
TABLE OF CONTENTS
Keywords . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . i Abstract .................................................................................... ............................... .ii
List of Publications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . v Statement of Original Authorship . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . viii Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ix
PART 1- 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 progress: Linking the research papers .................. . ........... 9 1 . 3 Account of research progress: Linking the objectives, aims and research
papers .......... . . . ............... .............................................. . ................................. 20 1 .4 Scope of the thesis ............................ . ...... . ............................................ ......... 26 1 .5 Original and significant contributions to knowledge ............................. ......... 30
Chapter 2 - Literature Review .................................................. .............................. 33
2 . 1 Introduction .......................... . ........................................................................ 33 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 framework 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 2- 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- Refusing Advance Refusals .......................................... . .................... 1 85
Chapter 7 - A Comparative Statutory Analysis ..................................................... 2 1 9
Vl
PART 3 - GENERAL DISCUSSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 246
Chapter 8 - Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24 7
8 . 1 Main features linking the publications cumulative effect of the papers . . . . . . 247 8 .2 Original and significant contributions to knowledge . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 262 8.3 Final ren1arks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 266
PART 4- 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 'Refusing Advance
Refusals ' Thesis by Published Paper. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 7 1
BIBLIOGRAPHY . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 273
Vll
STATEMENT OF ORIGINAL AUTHORSHIP
The work contained in this thesis has not been previously submitted for a degree or
diploma at any other higher education institution. To the best of my knowledge and
belief, the thesis contains no material previously published or written by another
person except where due reference is made.
Signature:
Date:
V111
ACKNOWLEDGEMENTS
Writing the acknowledgements section must surely be the most enj oyable stage of a
PhD. There are a number of people who I would like to thank.
First, sincere thanks to my supervisors (and close friends and colleagues), Associate
Professor Ben White and Associate Professor Ben Mathews. Their supervision was
outstanding. I greatly admire the intellect, rigour and integrity that they bring to all
aspects of their academic endeavours, and I was fortunate to benefit from these
qualities in the course of my doctoral studies. Their support as close friends and
colleagues was equally important, and I thank them for their confidence in my ability
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 of the most enjoyable aspects of academic life, and it
was satisfying to write two of the articles in my thesis with co-authors .
I also acknowledge the contribution of the broader academic community which
makes postgraduate study possible. Academics regularly and selflessly invest time
by supervising postgraduate research students, participating in final seminar panels
and examining theses. Without this investment, postgraduate study would grind to a
halt. Thanks also to the library staff, Susan Carter and Michael Unwin, who assisted
me on numerous occaswns.
Thanks to Jim, Kaley and Jessica who provided support through the long PhD
journey. They made sacrifices and celebrated the successes at many stages along the
way. Finally, I would like to acknowledge my parents, Ron Willmott and Shirley
Willmott, 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.
IX
PART 1: INTRODUCTION AND LITERATURE REVIEW
1
CHAPTER 1- INTRODUCTION
1.1 Description of the research problem, overall objectives
and specific aims
1 . 1.1 Description of the research problem investigated
Adults who are legally competent to make decisions about medical treatment
generally wish to engage in the decision-making process with their doctor, and
ultimately to decide on a treatment plan. Competent adults may also wish to make
decisions about medical treatment that they receive in the future, after the person
loses decision-making capacity (for example, through the progression of an illness
affecting cognitive function or through prolonged loss of consciousness) . These
decisions can and do frequently relate to treatment that the person does not wish to
receive, including life-sustaining medical treatment. Instructions about future
treatment that an individual does not wish to receive can be made in an advance
directive which is an oral or written statement giving instructions about medical
treatment. The issue of providing instructions about the withholding or withdrawing
of medical treatment is becoming increasingly important for two reasons. First, the
population is ageing, so that more individuals are likely to experience loss of
decision-making capacity at some future time. Secondly, advances in medical
science mean that it is increasingly possible for medical practitioners to keep a
person alive after the person has lost the capacity to make decisions about what
medical treatment he or she wishes to receive.
Yet, there is surprisingly little research into the nature and justifiability of existing
legal regimes about what an individual can do to make decisions about refusing
future medical treatment in such situations, which will bind medical practitioners and
others. Some research has considered cmmnon law principles governing advance
directives, and has remarked on the reluctance of the judiciary to follow advance
directives that refuse life-sustaining medical treatment. However, there has not been
a comprehensive review of all common law decisions in Australia and England
concerning advance directives that refuse treatment. Further, there has not been a
2
comprehensive examination of why advance directive legislation was enacted in
Australia, or of how these schemes operate. Nor has there been an evaluation,
through legal or theoretical critique, of the extent to which the common law and
legislative schemes promote (or restrict) individual autonomy.
This thesis identifies and comprehensively reviews the publicly available common
law decisions on advance directives in Australia and England, reviews the relevant
parliamentary debates to examine why advance directive legislation was enacted in
the various Australian jurisdictions, examines how those statutory schemes operate,
and undertakes a legal critique of the common law and a critical evaluation of the
extent to which existing common law and statutory regimes promote autonomy.
1.1.2 Overall objectives of the study
The principal objectives of this research are to identify how advance directives that
refuse life-sustaining medical treatment are regulated by the common law in
Australia and England and legislation in Australia, and to critically evaluate the
extent to which this regulation promotes the value of autonomy. The research is
concerned with a specific medico-legal context. The research investigates the
situation that arises when a person has made a decision in advance (through an
advance directive) to refuse life-sustaining medical treatment should a particular
medical situation eventuate, in circumstances where that situation does eventuate and
the person has then lost the capacity to make treatment decisions. The principal
objectives contain three more specific objectives.
The first objective is to select a nonnative framework against which to evaluate the
models of legal regulation. Informed by the principles that underpin the co1runon
law and legislative regimes, the framework of autonomy is identified as a possible
tool for this purpose. Once identified, the principle of autonomy is further explored
to test whether there is sufficient justification for it to be used as a tool against which
to evaluate models of legal regulation. This further research suggests that there are
broader grounds to justify its use as an evaluative tool. While my thesis does not
suggest that autonomy is the only organising principle which could be used for this
purpose, it concludes that it is at least a defensible one.
3
The second objective is to identify and synthesise both the common law in Australia
and England, and legislation on advance directives that operate in the various
Australian States and Territories. This analysis involves a consideration of when
advance directives will be valid, when they can be completed, when they can
operate, and the circumstances in which a medical professional is excused for not
complying with the directive.
The third objective is to critique the existing legal regimes. The critique of the
common law is undertaken at two levels. The first is a legal critique of the principles
applied and the reasoning employed by judges in arriving at their decisions. These
findings then inform a theoretical critique of the common law, to ascertain whether
the law, as applied, promotes the principle of autonomy. The statutory regimes are
then evaluated against the benchmark of autonomy. The research generated from
achieving the first and second objectives is used to undertake this critique of the
common law and legislation.
1.1.3 Specifi c aims of the study
To meet the overall objectives outlined above, a number of specific mms were
developed. These aims are considered below.
Identifying and developing an appropriate normative framework
The first objective is to select a normative framework against which to evaluate the
models of legal regulation. A number of specific aims were developed to meet this
objective.
The first aim [aim 1 . 1 ] for this objective is to identify those cases in Australia and
England that considered the principles that underpin the common law on advance
directives. The relevant principles in this regard are autonomy, and sanctity of life.
The common law observes that the principle of autonomy, from which emanates a
right of an individual to detennine his or her own treatment, demands that he or she
4
is able to refuse treatment, even if that results in the person' s death. On the other
hand, the common law cases also recognise the principle of the sanctity of life. This
principle 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 common
law balances the principles of autonomy and sanctity of life, and why autonomy was
chosen as the prevailing principle to guide the development of the common law when
assessing whether an advance directive that refuses life-sustaining medical treatment
should be followed. Although the courts generally note that tension exists between
the principles, there has not been a case involving advance directives in which a
court has decided that the sanctity of life should prevail over autonomy. Indeed, in a
recent Australian decision, one judge cited a famous Canadian case, noting that ' [t]o
deny individuals freedom of choice with respect to their health care can only lessen,
and not enhance, the value of life ' .1 This statement emphasises the prominence of
autonomy by suggesting that it, in itself, is an important component of human
existence which falls within the notion of sanctity of life and, therefore, deserving of
protection.
The third aim [aim 1 .3 ] is to locate and review the parliamentary debates in relevant
Australian jurisdictions to detennine the legal and policy justifications for enacting
legislation on advance directives. As demonstrated by that enquiry, legislatively
enshrining 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 cmrunon law and the relevant parliamentary debates
identified autonomy as an important principle to underpin legal regulation. The
fourth aim [aim 1 .4] of the research is to settle upon a definition of autonomy that is
adequate for the purpose of this thesis. This thesis does not purport to undertake a
comprehensive review of all of the philosophical and ethical literature on the various
meanings of autonomy. However, a review is carried out of the seminal literature
that has considered autonomy in the context of advance directives, and a definition
1 Malette v Shulman ( 1 990) 67 DLR (4th) 32 1 , 334 (Robins JA) cited by McDougall J in Hunter and New England Area Health Service v A (2009) 74 NSWLR 88, [ 16] .
5
that is satisfactory for the purpose of critiquing legal regulation of advance directives
is chosen.
The fifth aim [aim 1 . 5] is to determine whether autonomy, as identified by the
common law and (inferentially) in the parliamentary debates, can be justified as an
appropriate framework to underpin legal regulation of advance directives. As part of
this analysis, a sixth aim [aim 1 .6] is to examine the arguments that have been
advanced against autonomy as an appropriate standard in the context of legal
regulation 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 identifY and synthesise both the common law in Australia
and England, and legislation on advance directives that operate in the various
Australian States and Territories. There are only a handful of cases that consider the
law on advance directives in Australia and England, and this thesis identifies and
synthesises those decisions. This process is also undertaken in relation to all of the
statutes that regulate advance directives in Australian jurisdictions. In many
different aspects of statutory regulation, a comparative analysis across jurisdictions is
also undertaken. A number of specific aims were developed to achieve the second
objective.
The first aim [aim 2. 1 ] for this second objective is to identify all of the publicly
available common law decisions in Australia and England that consider whether or
not an individual ' s advance directive that refuses life-sustaining medical treatment
should be relied upon to determine treatment. Once identified, 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 has
arisen, 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 the
Australian States and Territories. Legislation has been enacted in six of Australia ' s
eight jurisdictions, Tasmania and New South Wales being the only jurisdictions
6
regulated by the common law alone. The fourth aim [aim 2.4] for this objective is to
review 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 excused
from not complying with an advance directive.
Critiquing the existing regulatory regimes
The third objective is to critique the existing legal regimes. The critique that is
undertaken has two components. The first is a legal critique which is canied out
predominantly in relation to the common law. Secondly, a theoretical critique is
undertaken which involves evaluating the common law and legislation against the
benchmark of autonomy. A number of specific aims were developed to achieve this
objective.
The first aim [aim 3 . 1 ] to achieve this objective is to conduct a detailed critique of
the common law cases. This i s carried out by analysing the judgments in all the
common law decisions that have been identified, and undertaking both a legal and
some theoretical critique of those decisions. The legal analysis focuses on the legal
principles that have been applied, and the reasoning employed by the judges. This
legal critique facilitates an assessment of the extent to which some members of the
judiciary promote or restrict the exercise of autonomy by competent individuals who
have completed an advance directive that refuses treatment. The purpose of this
exercise is to provide a better understanding of how, and possibly why, a particular
outcome regarding the applicability of advance directives is reached. An assessment
can then made of the extent to which in reality the common law decisions reflect or
promote the principle of autonomy.
The second aim [aim 3.2] is to identify barriers that may exist in the absence o f
statutory regulation, which militate against a common law advance directive that
7
refuses life-sustaining being followed. The focus here is on practical barriers such as
medical professionals being uncertain whether the directive is a valid one or whether
the individual had capacity when he or she completed it. These barriers are in
addition to those identified 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 regimes
governing advance directives to assess the extent to which statutory provisions
promote or restrict the exercise of autonomy by competent individuals.
1.1.4 Conclusion
This section of the chapter has described the principal objectives of the thesis, broken
them down into three main objectives, and set out the aims that have been developed
to achieve those objectives. For ease of reference, the three main objectives and
corresponding aims have been summarised in tabular form in section 1 .3 below. In
summary, the principal objectives of this thesis are to identify how the common law
(in Australia and England) and the legislation (in Australia) regulate advance
directives that refuse life-sustaining treatment, and to critically evaluate the extent to
which such regulation promotes autonomy.
The first objective of selecting a normative framework against which models of legal
regulation can be evaluated is achieved through meeting the specific aims of
identifying and reviewing relevant cases, parliamentary debates and legislation to
identify autonomy as the underpinning regulatory principle, selecting an appropriate
definition of autonomy and examining whether that principle can be defended as a
normative framework 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 specific aims of identifying all publicly available common
law decisions in Australia and England, all the relevant legislation in Australia and
reviewing that primary material to understand how the various regulatory regimes
operate.
8
The third objective of critiquing the existing legal regimes is achieved by the specific
aims of analysing the judgments in the case law to understand how and why
decisions are made, identifying other practical barriers that may militate against
common law directives being followed, and critiquing both the common law and the
legislative regimes against the benchmark of autonomy.
The research that has been undertaken to achieve the stated objectives has identified
problems with existing models of legal regulation for individuals who want to make
an advance directive that refuses life-sustaining medical treatment. The findings are
that existing methods of regulation need to be modified to enable competent adults to
make advance directives that refuse life-sustaining medical treatment, which will
bind health professionals and others, and thereby promote individual autonomy.
1.2 Account of research progress: Linking the research
papers
There are several purposes of this section of the chapter. First, the five research
papers that comprise the thesis are identified. Secondly, the interrelation of the
research papers is detailed, explaining how they progress from one to the other, and
how they form a cohesive body of literature. This exercise is intended to provide
continuity for the entire thesis. Finally, this section describes how the various papers
achieve 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 the
information that is provided in this section. The table provides an overview of the
objectives and aims of the thesis, and sets out the sections of the papers that achieve
those objectives and aims.
1.2.1 Five research papers
The thesis is comprised ofthe following five published papers:
9
1 . Lindy Willmott, Ben White and Ben Mathews, 'Law, autonomy and advance
directives ' (20 1 0) 1 8 Journal of Law and Medicine 366 (referred to as 'Law,
autonomy and advance directives')
2. Lindy Willmott, 'Advance directives refusing treatment as an expression of
autonomy: Do the courts practise what they preach? ' (2009) 38(4) Common
Law World Review 295 (referred to as 'Do the courts practise what they
preach? ' )
3 . Lindy Willmott, 'Advance directives to withhold life-sustaining medical
treatment : Eroding autonomy through statutory reform' (2007) 1 0 Flinders
Journal of Law Reform 287 (referred to as 'Eroding autonomy')
4 . Lindy Willmott, Ben White and Michelle Howard, 'Refusing advance
refusals: Advance directives and life-sustaining medical treatment' (2006) 30
Melbourne University Law Review 2 1 1 (referred to as 'Refusing advance
refusals ' )
5 . Lindy Willmott, 'Advance directives and the promotion of autonomy: A
comparative Australian statutory analysis' (20 1 0) 1 7 Journal of Law and
Medicine 556 (referred to as 'A comparative Australian statutory analysis ')
1.2.2 Preliminary comment
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 the
following analysis, there is a close correlation between the five papers, when
considered as an integrated whole (rather than individually) , and the three objectives
and associated aims identified in the preceding section. There is also a loose
correlation between the five papers and the objectives and aims which may be
helpful to identify at the outset.
1 0
Correlation between objectives and papers
Objective 1 is to select a normative framework against which the models of legal
regulation can be evaluated. To a large extent, the first paper, 'Law, autonomy and
advance directives' contributes to this objective.
Objective 2 is to identifY and synthesise the common law in Australia and England
and statutory regimes in Australia on advance directives. The common law is
examined predominantly in paper two, 'Do the courts practise what they preach? ' ,
while the statutory regimes are considered in the third, fourth and fifth papers,
'Eroding autonomy' , 'Refusing advance refusals ' and 'A comparative Australian
statutory analysis ' .
Objective 3 is to critique the existing legal regimes. A s for objective 2 , the common
law is critiqued predominantly in paper two, 'Do the courts practise what they
preach? ' , while the statutory regimes are critiqued in the third, fourth and fifth
papers, 'Eroding autonomy', 'Refusing advance refusals ' and 'A comparative
Australian statutory analysis ' .
Overlap of material across papers
A thesis by publication requires the published papers to be closely linked, and to
establish 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 following
example illustrates how this overlap can occur. In this thesis, the common law
governing advance directives was central to all three objectives: selecting the
normative framework of autonomy, identifying and synthesising the common law
principles, and critiquing those principles. Accordingly, it was necessary to consider
the 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 paper outlined the governing
principles, and examined in depth various aspects of the common law that has
received judicial consideration. Common law principles were also described (or
referred to), albeit to a lesser extent, in the other four papers. In the first paper,
1 1
'Law, autonomy and advance directives' , autonomy is positioned as the normative
framework for the thesis, and it was necessary to consider the common law
judgments to the extent that comments were made about how autonomy underpinned
the law. Further, in papers three, four and five, where the focus was on reviewing
the statutory models of regulation, common law principles were considered to
facilitate a comparative analysis between the common law and statutory regimes.
Where common law principles were considered in a linked context (as in papers one,
three, four and five), they were not examined in the same depth as was undertaken in
the primary work (in this case, in paper two).
The purpose of this preliminary comment is to explain the need for some level of
repetition across the published papers. As indicated, this is unavoidable and indeed
essential, given the need for the five papers to represent a cohesive and integrated
body of scholarship on a topic that is suitable for doctoral analysis.
1.2.3 Autonomy as appropriate normative framework: the first and
fifth papers
The first paper, 'Law, autonomy and advance directives ' , and sections of the fifth
paper, 'A comparative Australian statutory analysis ' ,2 are central to the development
of autonomy as the normative framework that underpins this thesis.
'Law, autonomy and advance directives' serves several functions. As a preliminary
matter, 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 views
about what is meant by the principle of autonomy, but the definition chosen for the
purpose of the fist paper is that ofRaanan Gillon's :
Autonomy (literally, self rule) is, in summary, the capacity to think, decide,
and act on the basis of such thought and decision freely and independently and
without . . . hindrance. 3
2 Lindy Willmott, 'Advance directives and the promotion of autonomy: A comparative Australian statutory analysis' (2010) 17 Journal 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' .
1 2
Secondly, the paper identifies the role that autonomy plays at common law. This
involves a consideration of the legal principles that are relevant in determining
whether an advance directive is valid and applicable to the medical situation that has
arisen. It also reviews the relevant judgments to distil the principles that the
judiciary consider to be relevant to guide lawmaking in this field. That review
concludes that the principle of autonomy has been expressed to prevail over that of
sanctity of life when considering a competent adult ' s right to refuse treatment,
whether contemporaneously or in advance of the medical situation arising.
The third and most substantial function of the paper is to consider whether the
principle of autonomy, identified by the common law as the relevant principle to
underpin legal regulation, can be justified. It is argued that this approach can be
justified on the following three grounds, each of which is considered in detail in the
paper:
1 . That the principle o f autonomy is consistent with the principles and values
that are prioritised in a liberal democracy;
2. That the principle of autonomy is consistent with prevailing principles m
medical ethics discourse; and
3 . That the principle of autonomy IS consistent with the common law that
governs contemporaneous (rather than advance) refusals of life-sustaining
medical treatment.
As part of its justification of autonomy as an appropriate nonnative framework, the
paper engages with literature that is critical of autonomy as an organising principle to
justify the regulation of advance directives . These criticisms, which are made both
from a theoretical and practical perspective, are explored and reasons advanced as to
why these criticisms should not prevent autonomy from operating as an underpinning
principle. 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 treatment of the terminally ill' in AH Maehle and J Geyer-Kordesch (eds), Historical and Philosophical Perspectives on Biomedical Ethics: From Paternalism to Autonomy (Aldershot, 2002) 129, 1 30.
1 3
1 . An advance 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 from the competent adult who completed the advance directive.
2. There may be some models besides autonomy - for example, a model that
considers the adult ' s condition, prognosis, views ofthe adult ' s loved ones and
concerns of the adult ' s broader community, that are better suited to underpin
the regulation of advance directives.
3 . Most individuals have not received sufficient information t o enable them to
satisfactorily complete an advance directive that purports to cover a wide
range of future 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 be
accommodated if advance directives are binding.
5 . An advance directive may not, in fact, be a true reflection of the competent
adult 's wishes.
6. An advance directive rarely provides helpful information to medical
professionals.
The first paper contributes to the objective one by establishing autonomy as an
appropriate principle against which legal regulation should be assessed. It achieves
the specific aims of identifying and reviewing common law judgments that consider
underpinning principles (aims 1 . 1 and 1 .2), justifying autonomy as an appropriate
normative framework (aim 1 . 5), and addressing criticisms of autonomy in this
context (aim 1 .6) .
The fifth paper, 'A comparative Australian statutory analysis ' , is relevant to
identifying autonomy as a normative framework in two ways. First, in the same way
that the first paper reviewed the common law judgments to determine the principle
that underpinned the common law, this paper reviews the parliamentary debates in al l
Australian jurisdictions that have enacted legislation on advance directives. That
review identifies uncertainty about applicability of common law principles as the
major driver for statutory reform. Inferentially, the desire to statutorily enshrine the
common law recognises the importance and significance of the principle of
autonomy in the regulation of advance directives. The second aspect of this paper
1 4
that is relevant to the first 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. Defining what
the concept means in an applied context is critical when it is being used as a standard
against which to assess legal regulation.
The fifth paper also contributes to objective 1 of establishing autonomy as a
normative framework. It achieves the specific aims of locating and reviewing
parliamentary 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 the
fourth paper, 'Refusing advance refusals ' , 4 consider the common law regime that
governs advance directives that refuse life-sustaining medical treatment . A section
of the fifth paper, 'A comparative Australian statutory analysis ' , 5 is also relevant in
identifying practical barriers that may hinder common law advance directives from
being fo llowed and, thereby, may work against the promotion of autonomy.
The fourth paper, 'Refusing advance refusals ' , deals with the common law in two
respects. It sets out the common law principles that govern the validity and
applicability of common law advance directives. In addition, it considers the
circumstances in which it is permissible for a medical professional not to comply
with a refusal of treatment as set out in an advance directive. A medical professional
is excused for non-compliance with a common law directive where the person
making the directive did not intend (or possibly did not intend) it to apply in the
situation that has later arisen. This will occur in the following circumstances :
4 Lindy Willmott, Ben White and Michelle Howard, 'Refusing advance refusals: Advance directives and life sustaining medical treatment' (2006) 30 Melbourne University 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 directives. 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 5
1 . There has been a change in circumstances since the advance directive was
completed, 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 based on incorrect information or on in incorrect
assumption; and
4. The advance directive does not give a direction in the circumstances that have
ansen.
'Refusing advance refusals ' contributes to objective two by explaining the common
law principles that govern advance directives. It achieves the specific aim of
reviewing the common law decisions to establish the relevant principles that govern
when an advance directive is valid, when it is applicable to the medical situation that
has arisen, and when a medical professional is excused for not following it (aim 2.2).
The second paper, 'Do the courts practise what they preach?' undertakes a review of
all of the publicly available decisions in Australia and England in which courts (or
tribunals) have been asked to deliberate on whether an advance directive that
purports to refuse life-sustaining medical treatment should be followed. This paper
builds on 'Refusing advance refusals' which sets out the common law principles and
which observes that those principles are consistent with the principle of autonomy.
'Do the courts practise what they preach? ' takes the common law analysis further by
analysing the judgments in the cases, and exploring how courts (and tribunals) reach
decisions about whether or not an advance directive that refuses treatment will
prevail. 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 a
critique of the application of legal principles to the facts of the cases.
There are two components of this first limb of the legal critique. The first
component explores circumstances in which the courts have developed the common
law on advance directives in a way that is inconsistent, or at least does not sit
comfortably, with accepted authority. One such circumstance is the suggestion in
some decisions that an advance directive should be based on sufficient information.
1 6
Another is the approach taken in some cases in relation to issues of proof As
explained in 'Do the courts practise what they preach?' , neither of these propositions
can be supported from an application of legal principle. The second component of
the first limb of the legal critique is an examination of how, in some cases, the
adjudicat ing courts or tribunals have simply applied incorrect or irrelevant legal
principles in making their decisions. Again, these are explored in depth in 'Do the
courts practise what they preach? '
The second limb of the legal critique focuses not on whether the legal principle is a
correct one, but how that legal principle is applied to the facts of the case. The paper
argues that adjudicating courts and tribunals, in some cases, take a strained
interpretation of facts to achieve what the adjudicator may warrant to be a more
acceptable outcome.
'Do the courts practise what they preach? ' concludes that the errors in, or at least the
questionable approach taken in relation to, the development and choice of relevant
legal principle, and way in which the law is applied to the facts raise a question about
whether the application of the common law by judicial and quasi-judicial bodies in
practice promotes autonomy. The question that is raised is supported by the fact that
the rhetoric employed and approach taken in drafting judgments, reveals a preference
for the principle of sanctity of life over that of autonomy. In this way, the second
paper also undertakes a level of theoretical critique of the extent to which the
application of the common law by some members of the judiciary promotes
autonomy.
'Do the courts practise what they preach? ' contributes to objective three by
undertaking 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 detailed
review and critique of all of the publicly available common law cases and analysing
the 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 also
relevant to the critique of common law. In a section of the paper entitled 'Practical
1 7
barriers to recogmsmg advance directives at common law' , some important
observations were made about why, in practice, an advance directive may not be
followed, despite the fact that the common law principles are largely consistent with
the principle of autonomy. This section of the paper contributes to objective three by
assessing the common law, as it is applied or interpreted in medical practice, against
the benchmark of autonomy. The paper achieves the specific aim of identifying
barriers that may exist in the absence of statutory regulation which militate against a
common law advance directive that refuses 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 fifth papers examine in detail the six legislative regimes that
operate 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 governed solely by the common law are New South Wales
and Tasmania.
The third paper, 'Eroding autonomy', provides an overview of the statutes in all
Australian jurisdictions that have enacted legislation. Particular focus is placed on
the Queensland legislation which is used as a case study on the extent to which
statutory enactment can restrict autonomy. The paper critiques the legislative
regimes against the common law and also against the principle of autonomy. It also
provides examples of how statutory restrictions have more adverse consequences for
some individuals over others in terms of their impact on autonomy.
The fourth paper, 'Refusing advance refusals ' builds on the review undertaken m
'Eroding autonomy' . It goes further b y considering, in more depth, the
circumstances in which a medical professional is excused from following an advance
directive that refuses life-sustaining medical treatment . This issue is an important
aspect of statutory regulation of advance directives because it has the potential to
impinge significantly on a competent person's right to dictate future treatment. The
1 8
paper concludes that an individual can be less confident that a medical professional
will comply with his or her advance directive than if the directive were governed by
the common law.
'Refusing advance refusals' contributes to objective two of reviewing the legislative
regimes in six Australian jurisdictions by analysing an important legislative ground
for a medical professional not complying with an advance directive. The paper
achieves the specific aim of reviewing the statutes to examine this aspect of
regulation of advance directives (aim 2 .4) . 'Refusing advance refusals' also
contributes to objective three of assessing the existing legal regimes against the
benchmark of autonomy. The paper achieves the specific aim o f conducting a
detailed review and critique of a critical aspect of statutory regulation which directly
impacts on the extent to which an individual is able to exercise autonomy (aim 3.3) .
The fifth paper, 'A comparative Australian statutory analysis ' , builds on the third and
fourth papers, but is also broader in scope. It provides a comprehensive review of all
aspects of legislation in all jurisdictions. There are a number of components of the
statutory regimes that are considered:
1 . Why legislation was enacted in the various jurisdictions;
2. The kinds of statutory limitations or restrictions that are imposed on
individuals who choose to complete an advance directive that refuses life
sustaining medical treatment; and
3 . The extent to which the restrictions that are imposed by legislation can be
justified on the basis of promoting an individual ' s autonomy.
'Eroding autonomy', 'Refusing advance refusals ' and 'A comparative Australian
statutory analysis' all contribute to objective two of analysing in detail the legislation
on advance directives in the various Australian States and Territories. These papers
achieve the specific aim of reviewing the statutes to examine the way in which
advance directives are regulated (aim 2 .4) . 'Eroding autonomy', 'Refusing advance
refusals ' and 'A comparative Australian statutory analysis' also contribute to
objective three of critiquing the existing legal regimes against the benchmark of
1 9
autonomy. The papers achieve the specific aim of conducting a detailed review and
critique of the legislative regimes goveming advance directives to assess the extent
to which statutory provisions promote or restrict the exercise of autonomy by
competent 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 and
aims of the research are addressed in the five research papers that comprise the
thesis.
The principal objectives of this research are to identify how the common law in
Australia and England and legislation in Australia regulate advance directives that
refuse life-sustaining medical treatment, and to critically evaluate the extent to which
this regulation promotes the value of autonomy. These principal objectives have
been divided into three more specific objectives which appear in the left-hand
column of the table. The aims that were developed to achieve those objectives were
described earlier and are included in the middle column. The sections of the papers
that address the objectives and associated aims are listed in the right-hand co lumn.
Objectives Aims
Ob[ective one: Aim 1. 1 :
To select a To identify those cases in normative Australia and England that framework against considered the principles that which to evaluate underpin the common law on the models of legal advance directives. regulation.
20
Section of relevant
p aper that achieves
objective and aim
Paper 1 :
• II C 'Autonomy underpinning legal recognition of advance directives'
Objectives Aims
Aim 1 .2: To review those decisions to evaluate how the common law balances the principles of autonomy and sanctity of life, and why autonomy was chosen as the prevailing principle to guide the development ofthe common law when assessing whether an advance directive
that refuses life-sustaining medical treatment should be followed.
Aim 1 . 3:
To locate and review the parliamentary debates in relevant Australian jurisdictions to determine the legal and policy justifications for enacting legislation on advance directives.
Aim 1 . 4:
To settle upon a definition of autonomy that is adequate for the purpose of this thesis.
Aim 1 . 5:
To determine whether autonomy, as identified by the common law and (inferentially)
in the parliamentary debates, can be justified as an
appropriate framework to underpin legal regulation of advance directives.
2 1
Section of relevant
paper that achieves
obj ective and aim
Paper 1 : • II C 'Autonomy
underpinning legal recognition of advance directives '
Paper 5: • 'Expressed
significance of autonomy in common law and statutory regulation'
Paper 5:
• 'Expressed significance of autonomy in common law and statutory regulation'
Paper 1 :
• I ' Introduction'
Paper 5:
• 'Essence of autonomy at common law'
Paper 1 :
• Ill 'Autonomy justified legal recognition of advance directives '
Objectives Aims
Aim 1 . 6:
To examine the arguments that have been advanced against autonomy as an appropriate standard in the context of legal regulation of advance directives, and critique whether the justification of autonomy is sound in light of those criticisms.
Obiective two: Aim 2. 1 :
To 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 refuses life-sustaining advance directives medical treatment should be that operate in the relied upon to determine various Australian treatment. States and Territories .
Aim 2. 2:
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 has arisen, and when a medical professional is excused for not following it.
22
Section of relevant
paper that achieves
obj ective and aim
Paper 1 :
• IV 'Responding to critiques of autonomy and advance directives '
Paper 2 :
• II 'The common law (as enunciated by the judiciary) '
• Appendix
Paper 1 :
• II A 'Validity of advance directives '
• II B 'Applicability of advance directives '
Paper 3 : • Ill 'Advance
directives at common law'
Paper 4:
• 2 . 1 'Common law advance directives'
• 3 'Excuse for non-compliance with common law advance directives '
Obj ectives Aims
Aim 2. 3:
To identify the legislation that has been enacted in the
Australian States and Territories.
Aim 2. 4:
To review those statutes to examine the way in which advance directives are regulated.
23
Section of relevant
paper that achieves
obj ective and aim
Paper 2:
• Ill ' Statutory reform'
Paper 3 :
• II 'Advance health
directives in Queensland '
• IV 'Advance directives in other statutory jurisdictions'
Paper 4:
• 2.2 'Statutory advance directives '
• 4 'Excuse for non-compliance with statutory advance directives '
Paper 5:
• Table 1 'A comparison of advance directive provisions by statutory jurisdictions '
Obj ectives Aims
Obiective three: Aim 3. 1 :
To critique the To conduct a detailed critique of existing legal the common law cases. This is regimes. carried out by analysing the
judgments in the common law decisions that have been
identified, and undertaking both a legal and some theoretical critique ofthose decisions.
24
Section of relevant
paper that achieves
objective and aim
Paper 2:
• IV 'The common law (as applied by the judiciary) - an overview '
• V 'Unprincipled evolution of co1mnon law principles'
• VI ' Inappropriate adjudication by judicial or quasi-judicial bodies '
• VII ' Strained interpretation of facts '
• VIII 'Rhetoric and
approach in judgments reveal preference for the principle of sanctity of life'
Paper 3 :
• IIID ' Judicial
approach to advance directives about withholding and withdrawing life-sustaining measures '
Paper 4:
• 6 ' Judicial approaches to proof
Objectives Aims
Aim 3 .2:
To identify barriers (in addition to those identified under aim 3 . 1 ) that may exist in the absence of statutory regulation, which militate against a common law advance directive that refuses life-sustaining treatment being followed.
Aim 3 .3:
To conduct a detailed critique of the legislative regimes governing advance directives to assess the extent to which statutory provisions promote or restrict the exercise of autonomy by competent individuals.
25
Section of relevant
paper that achieves
obj ective and aim
Paper 5:
• 'Practical barriers to recognising advance directives at common law'
Paper 3 :
• V 'Critique of legislative regulation of advance directives: a statutory case study'
Paper 4:
• 5 'A comparative analysis '
Paper 5:
• ' Statutory regimes: an overview'
• 'Requirements of capacity and absence of vitiating factors'
• 'Requirement to provide information'
• 'Circumstances in which an advance directive can be completed'
• 'Circumstances in which an advance directive can operate'
• 'Circumstances in which an advance directive can be ignored'
1.4 Scope of the thesis
This thesis explores the extent to which legal regulation allows competent adults to
make advance directives refusing life-sustaining medical treatment that will bind
health professionals and others at a later time. There is a range of issues that are
associated with or relevant to this topic, but do not fall within the ambit or scope of
this thesis. These issues are described below.
1.4. 1 Other kinds of advance directives
Advance directives can be, and are, completed for a range of reasons. Most of the
academic literature and debate focus on directives that refuse life-sustaining medical
treatment, but advance directives have other roles. They can set out treatment
preferences including medical treatment, in addition to life-sustaining treatment, that
the 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 latter
scenario gives rise to another controversial issue, namely the extent to which an
individual can require the provision of treatment that medical professionals regard as
clinically futile. 6 Another form or style of advance directive is one in which an
individual sets out more general statements regarding 'outcome preferences ' rather
than specifying details of treatment that he or she wishes to receive or refuse. 7
Finally, there is a body of literature that considers 'psychiatric advance directives '
which are generally completed by individuals who suffer from mental illness. 8 Such
6 At common law, there is no obligation on a medical professional to provide treatment that is clinically futile: R (Burke) v General Medical Council [2006] QB 273 , 30 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 235 , 25 1 ; Messiha v South East Health [2004] NSWSC 1061 . 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 selfresponsibility' (2006) 40 University of Michigan Journal 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 Journal of Health Law 1 9; JA Dunlap, 'Mental health advance directives: Having one's say?' (2000) 89(2) Kentucky Law Journal 3 27; T
26
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 arise
with this kind of directive if the individual, at a later time when he or she becomes
unwell, strongly objects to the treatment decisions recorded in the advance directive.
1.4.2 Practical impediments relating to advance directives
Many commentators argue that there are serious practical impediments to the uptake
and use of advance directives, particularly in the context of directives that refuse life
sustaining medical treatment. Research indicates that competent individuals are
reluctant to complete advance directives9
despite, in some cases, significant
investment of funding in projects designed to encourage their completion. 10
There
are also a range of concerns about the operation of advance directives once they are
completed, and these are considered in chapter 2 . 1 1
The focus of this thesis is on the legal regulation of advance directives, and the
extent to which that regulation permits a person to give a directive that refuses life
sustaining medical treatment. The fact that there may be some difficulties about the
prevalence or drafting 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 directives for psychiatric care: A theoretical and practical overview for legal professionals' (1998) 4(3) Psychology, Public Policy, and Law 746; A Macklin, 'Bound to freedom: The Ulysses contract and the psychiatric will' ( 1987) 45 University of Toronto Faculty of Law Review 37. For an examination of the role that 'mental health' advance directives can play where an individual has been diagnosed with Alzheimer's disease, see L Brodoff, 'Planning for Alzheimer 's disease with mental health advance directives ' (2009) 17 Elder Law Journal 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 future' (2008) 15 Journal of Law and Medicine 530; S Sahm, R Will and G Hommel, 'Attitudes towards and barriers to writing advance directives amongst cancer patients, healthy controls, and medical staff' (2005) 31 Journal 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 project 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 frequency of prolonged processes of dying. This project 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 Steinbrook, 'Resuscitating advance directives ' (2004) 164 Archives of Internal Medicine 1501; K Covinsky et al, 'Communication and decisionmaking in seriously ill patients: Findings of the SUPPORT project' (2000) 48(5) Journal of the American Geriatrics Society S l 87; N Cantor, 'Making advance directives meaningful' (1998) 4(3) Psychology, 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) Journal of Gerontological Nursing 4. 1 1 Ch 2, s 2.6.2.
27
tangentially relevant to the thesis. Provided the practical issues that exist are not so
overwhelming or fundamental as to challenge the core notion that competent
individuals should be able to refuse treatment in advance, they are issues to be
resolved at another time.
This thesis, therefore, does not purport to comprehensively describe the wide-ranging
criticisms of a practical nature that are levelled at advance directives. Instead, it
raises the major impediments as revealed in the literature, and concludes that these
are not sufficient to justify removing the right of a competent individual to complete
an advance directive that refuses life-sustaining medical treatment. 1 2
1.4.3 Consequences of failing to comply with an advance dire ctive
As described above, this thesis explores the extent to which regulation allows a
competent adult to complete an advance directive that refuses life-sustaining
treatment . An important component of the research is to determine whether, and in
what circumstances, such directive will be binding on health professionals who are
responsible for the now incompetent individual ' s care. As will be demonstrated,
non-compliance with a valid and applicable directive refusing life-sustaining medical
treatment will (generally) expose the person providing treatment to potential criminal
and 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 treated
contrary to his or her expressed wishes. 1 3 A consideration of the need to broaden
legal redress and the shape such remedies should take are, however, beyond the
scope ofthis research.
1.4.4 Implications of legal complexities on clinical practice
There is a broader body of literature that highlights clinical challenges that can arise
from the application of the law in relation to advance directives and the more general
1 2 Lindy Willmott, Ben White and Ben M a thews, ' Law, autonomy and advance directives ' (20 1 0) 1 8 Journal of Law and Medicine 366, s V. 1 3 This literature is considered in eh 2, s 2 . 7.
28
field of decision-making for adults who lack capacity. For example, there is
considerable literature that considers practical ways of improving the end-of-life
decision-making process itself 14 Professional bodies such as the Australian Medical
Association and the Australian Medical Council have also provided assistance to
medical professionals in this ethically challenging area, 1 5 and there is commentary on
the statements that have been developed by those organisations. 1 6 Some literature
engages with specific legal issues that arise in the end-of-life context which presents
particular challenges for clinicians. Such issues include the difficulty in determining
whether an individual has capacity to make a treatment decision for him- or herself, 1 7
the extent to which a substitute decision-maker is able to accurately predict the
decision that the patient would have made had he or she had capacity to decide on
treatment, 1 8 the extent to which 'not for resuscitation' decisions are informed by
appropriate consultations and are legally compliant/9 and the difficulty in
withdrawing life sustaining treatment where medical technology reveals a level of
consciousness o r awareness. 2° Finally, some literature advocates the need for
medical 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 Journal of Law and Medicine 74; M Ashby, A Kellehear and B Stoffell, 'Resolving conflict 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 including The 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 frameworks and the Australian Medical Association ' (2007) 37 Internal Medicine Journal 637. 1 7 For example, B Collier, C Coyne and K Sullivan (eds), Mental Capacity: 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 Journal 325; P Biegler and C Stewart, ' Assessing competence to refuse medical treatment' (2001) 174 Medical Journal 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 Internal 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, KR 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.
29
manage patients at the end of life, including respecting expressed wishes about
treatment .2 1
1.5 Original and significant contributions to knowledge
This thesis undertakes a comprehensive review and analysis of the common law and
legislation that regulates advance directives. It makes original and significant
contributions to knowledge within the legal discipline in seven ways.
First, while there has been some literature that considers judicial views and attitudes
as evident from the judgments, the research carried out in this thesis takes that
scholarship much further, as it is the first time that all of the publicly available cases
on common law advance directives in Australia and England have been identified
and reviewed.
Secondly, the legal critique of those decisions, which is more thorough and detailed
than attempted elsewhere, has identified two critical and practically significant
anomalies in the development of the common law in this field: the suggestion that an
advance directive must be based on sufficient information to be valid; and the
suggestion that, for a directive to be upheld by a court, a person who advocates for it
to be followed has the onus of proving its existence and continuing validity and
applicability. The legal critique also identifies a number of errors in legal reasoning
by some members of the judiciary, such as failing to consider whether a written
statement that refused treatment constituted a common law advance directive and, as
such, needed to be followed by the treating medical team. Another error identified
by the research is the failure of adjudicating bodies to make appropriate inquiries to
ensure that all relevant facts were obtained about whether a valid advance directive
existed.
2 1 See, for example, C Cartwright, 'End-of-life decision making: Practical and ethical issues for health
professionals' (2000) 19(2) A ustralasian Journal on Ageing 57.
30
Thirdly, this is the first time that a legal critique has informed a theoretical critique of
whether the common law, as applied by some members of the judiciary, is consistent
with the principle of autonomy.
The remammg (fourth to seventh) original and significant contributions to
knowledge relate to the other model of legal regulation: the legislation in six
Australian jurisdictions. As outlined in the literature review, there is only a limited
amount of literature in Australia that has reviewed the legislation, and this has
generally been done in a piecemeal fashion rather than a consideration of the overall
statutory schemes. This thesis covers new ground in the manner described below.
Fourthly, the thesis undertakes a review of the parliamentary debates that occurred
when the various statutes were introduced. This review facilitates an examination of
the policy considerations that underpin the legislation.
Fifthly, the thesis comprehensively reviews how all of the legislation in the six
statutory jurisdictions regulate advance directives: the formal requirements that
apply, when advance directives may be completed, when they may operate, and
when they need not be complied with.
Sixthly, the thesis considers what kind of provisions legislation should contain, or
not contain, to allow competent adults to complete binding advance directives. That
is, the research identifies the features of legislation that must exist to promote
individual autonomy.
Finally, the thesis then undertakes a comprehensive critique of relevant legislative
provisions to detennine the extent to which the regulation promotes or restricts
autonomy. While the critique occurs across all legislative jurisdictions, there is a
particular focus on the Queensland legislation because regulation in that jurisdiction
is more restrictive of autonomy than anywhere else in Australia. The critique also
emphasises the excuses that can be used by medical professionals for not following
advance directives because these excuses have a significant potential to erode
individual autonomy.
31
This research concludes that there are problems with existing regulatory models. A
competent adult cannot be confident that his or her advance directive that refuses
life-sustaining medical treatment will be complied with by health professionals and
others at a later time. Legislative reform is necessary to address these problems.
32
CHAPTER 2 - LITERATURE REVIEW
2.1 Introduction
This thesis is about the law that regulates advance directives, and there is an
extensive amount of literature that is relevant to this topic, either directly or in a
more general way. This chapter considers that literature and, to do so, is divided into
several sections.
The first section (section 2 .2) provides some preliminary and contextual information
about advance directives. An overview is given about terminology that is commonly
used, as well as a brief account of the history of advance directives. This section
concludes with an account of the major developments in Australia that have
contributed to the evolution of advance directives as a component of health care
planning.
The next section (section 2 .3 ) positions advance directives within the broader context
of decision-making for adults who lack capacity. An advance directive is a decision
making mechanism which may result in life-sustaining medical treatment being
withheld or withdrawn. However, the law that governs advance directives is just one
part of a broader body of regulation. There is a range of circumstances in which the
common law recognises that the withholding or withdrawal of treatment may be an
appropriate course of action. Further, guardianship legislation has now been enacted
in all Australian States and Territories . In most jurisdictions, this legislation also
facilitates decisions about the withholding or withdrawal of treatment being made on
behalf of an adult who lacks capacity. Section 2 .3 reviews some of the literature that
deals with this broader body of regulation.
There is also a body of literature that is directly relevant to this thesis. Some of this
literature describes (section 2 .4) or critiques (section 2 .7) the Australian or English
common law that governs advance directives, or describes (section 2 . 5) or critiques
33
(section 2 .8 ) the Australian legislation on advance directives. 1 There is also an
extensive body of literature on autonomy. This thesis does not purport to engage
with all of the literature on autonomy in the context of health care. However, it does
consider the seminal work on autonomy in the context of advance directives. This
literature is reviewed in section 2 .6 .
This is a PhD by publication, and includes five published papers which appear as
chapters 3 to 7 of this thesis. As these papers have now been published, 2 they form
part of the literature in the field. When considering the literature that currently exists
for the purpose of this literature review, however, these five papers are not included.
Therefore, when considering the gaps that exist in the current literature, it is on the
basis that these five papers are not part of the literature pool. This chapter concludes
with section 2.9 which considers how this thesis has filled some of the gaps that were
identified in the literature review. It is in this section that the five papers are
considered.
2.2 Advance directives: background
2 .2 . 1 Terminology
Various terms are used in the literature to refer to the concept of advance directives
including ' advance health care directives ' , 'advance statements' , 'personal directive '
and ' advance decision' . A range of tenns is also used in the Australian legislation,
including 'anticipatory direction' , ' advance health directive ' , 'refusal of treatment
certificate' , 'health direction' and a 'notice of direction' . The tenns have also been
variously defined. One definition that summarises the concept well was drafted by
the Irish Council for Bioethics :
1 Note that this thesis does not describe or critique the Mental Capacity Act 2005 (UK) that operates in England. However, there is a burgeoning body of literature on the legislation and the extent to which it has altered the common law. For a useful commentary on the Mental Capacity Act 2005 (UK), see P Bartlett, Blackstone 's Guide to The Men tal Capacity Act 2005 (Oxford University Press, 2nd ed, 2008). 2 At the time the thesis was submitted for examination, the first paper, Lindy Willmott, Ben White and Ben Mathews, 'Law, Autonomy and Advance Directives' has been accepted for publication in the Journal of Law and Medicine but not yet published.
34
An advance healthcare directive is a statement made by a competent adult relating to the type and extent of medical treatments he or she would or would not want to undergo in the future should he/she be unable to express consent or dissent at that time. 3
The term 'advance directive' is often used interchangeably with the tetm ' living
will ' , particularly in the United States literature, both documents being able to
perform the same function. Originally, however, a living will was more limited in its
scope, the purpose being to give instructions about medical care at the very end of
life when death was imminent.4
2.2.2 Origins of the advance directive
Advance directives are designed to provide a competent individual with a level of
control over medical treatment received or not received if decision-making capacity
is lost. At the time that advance directives (or living wills) became the subject of
debate in the late 1 960s, the desire to have some control over medical treatment was
driven by two important factors. 5 First, medical practice had started to witness a
shift from medical paternalism to a decision-making model in which treatment
preferences of the patient, informed by the disclosure of relevant information by the
doctor, assumed greater importance. Secondly, medical technology was progressing
so that it was possible to keep a person alive, or perhaps, more accurately, prolong
the person' s dying process through medical intervention, in circumstances where the
individual' s quality of life was unacceptable to that person.
A lawyer from Chicago , Luis Kutner, is credited with creating the concept of a living
will. In an article published in 1 969, Kutner considered the problems that arise when
3 The Irish Council for Bioethics, Is it Time for Advance Healthcare Directives?, Opinion (2007) 1. 4 A Capron, 'Advance directives' in H Kuhse and P Singer (eds), A Companion to Bioethics (Blackwell Publishing, 2nd ed, 2009) 299, 3 00. In 1991, The Law Commission for England and Wales drew a sharp distinction between these documents, suggesting that advance directives were used to enable a patient to refuse or change treatment in relation to an existing illness, whereas a living will was designed to ensure treatment was withheld if the patient became so mentally or physically ill that there was no prospect of recovery: Law Commission, Mentally Incapacitated Adults and DecisionMaking: An Overview, Consultation Paper No 119 (1991) [6.2], [6.5] (as extracted in Law Reform Commission oflreland, Bioethics: Advance Care Directives, Consultation Paper (2008) 11 ) . 5 The Irish Council for Bioethics, above n 3, 1; K Kirschner, 'When written advance directives are not enough' (2005) 21 ( 1) Clinics in Geriatric Medicine 193, 194; Capron suggests that a further important purpose of a living will is to relieve the decision-making burden from family, particularly when a wish not to receive life-saving treatment is driven by the desire to avoid the emotional and fmancial burdens that may otherwise be placed on family: Capron, above n 4, 301.
35
a person loses consciousness as a result of an accident or disease.6 Kutner observed
that, unless advised to the contrary, the physician will presume that it is the patient ' s
desire that his or her life should be preserved. However, depending on the quality of
that life, this may not represent the patient ' s preference. The following solution was
proffered by Kutner:
. . . the suggested solution is that the individual, while fully in control of his faculties and his ability to express himself, indicate to what extent he would consent to treatment. The document indicating such consent may be referred to as "a living will, " "a declaration determining the termination of life," "declaration for ending treatment," "body trust," or some other similar reference [original emphasis] . 7
Notwithstanding this novel solution, concerns remained about the legal effect of such
a document. Doctors were reluctant to withhold or withdraw treatment because of
possible legal repercussions for failure to provide treatment that could preserve life. 8
To address these concerns, in 1 976 California passed legislation that protected
doctors who relied on such documents. Many other American States followed suit. 9
2.2.3 Advance directives i n Australia - reviews, reports and guidance
Legislation governing advance directives has been considered by most State and
Territory governments, as legislation has been enacted in all Australian jurisdictions
except New South Wales and Tasmania. 1 0 The regulation of advance directives has
6 L Kutner, 'Due process of euthanasia: The living will, a proposal' ( 1 968) 44 Indiana Law Journal 539. For early commentary on the use of such a form, see S Bok, 'Personal directions for care at the end of life' ( 1 976) 295(7) The New England Journal of Medicine 3 67; and W Modell, 'A will to live' ( 1 974) 290( 1 6) The New England Journal of Medicine 907. 7
Kutner, above n 6, 55 1 . 8 Capron, above n 4, 300- 1 ; Law Reform Commission oflreland, above n 4, [ 1 .06]. 9 Capron, above n 4, 300; The President' s Council on Bioethics, Taking Care: Ethical Caregiving in our Aging Society (2005) 59; B Brown, 'The history of advance directives: A literature review' (2003) 29(9) Journal of Gerontological Nursing 4, 4. 1 ° Current Australian legislation is explored in detail in the 5th paper, Lindy Willmott, 'Advance directives and the promotion of autonomy: A comparative Australian statutory analysis' (20 1 0) 1 7 Journal of Law and Medicine 5 5 6 (reproduced i n eh 7 o f this thesis) . In South Australia, the government established an Advance Directive Review Committee to consider existing legislation and make recommendations for reform. In the course of its review, the Committee published the following papers: Planning Ahead: Your Health, Your Money, Your Life, First Report of the Review of South Australia's Advance Directives (2008); Planning Ahead: Your Health, Your Money, Your Life, Second Report of the Review of South Australia ' s Advance Directives (2008) ; Planning Ahead: Your Health, Your Money, Your Life, An Issues Paper for the Review of South Australia's Advance Directives (2007) . In Western Australia, many years after the Western Australian Law Reform Commission published Medical Treatment for the Dying, Report No 84 ( 1 99 1 ) , the Western Australian government released Medical Treatment for the Dying, Discussion Paper (2005) for
36
also been considered by many law reform agenc1es, frequently in the context of
reviews of guardianship legislation more generally. 1 1 Many o f these reviews have
resulted in legislative reform.
In addition to legislative regulation, a number of organisations have developed
guidance about the implications of advance directives in different clinical contexts.
For example, the National Health and Medical Research Council has developed
ethical guidelines for the care of people in post-coma unresponsiveness. 12 As part of
that guidance, recommendations are made about the treatment that should be given or
refused if the patient has an advance directive. 1 3 In some jurisdictions, State
govermnents also provide guidance to health professionals and others about the
obligations that arise in the course of providing health care when an adult has
completed an advance directive. 14
community comment. This review ultimately led to the enactment of the Acts Amendment (Consent to Medical Treatment) Act 2006 (W A). The Department of Justice and Community Safety in the Australian Capital Territory reviewed its legislation and produced recommendations in Substitute Decision-Making: Review of the Powers of A ttorney Act 1956, Issues Paper (2004). This review preceded the enactment of the Medical Treatment (Health Directions) Act 2006 (ACT). 1 1 The Queensland legislative regime, embodied in the Powers of Attorney Act 1 998 (Qld) and the Guardianship and Administration Act 2000 (Qld) was enacted after a comprehensive review by the Queensland Law Reform Commission, Assisted and Substituted Decisions: Decision-Making by and for People with a Decision-Making Disability, Report No 49 ( 1 996). The legislation is currently the subj ect of further review by the Commission, a preliminary paper having been released in 2009: A Review of Queensland's Guardianship Laws Discussion Paper, Working Paper No 68 (2009). The final report is due for release later in 201 0 . The Victorian guardianship legislation is also currently the subject of review by the Victorian Law Reform Commission, and the Commission is expected to report to the government by June 201 1 : Guardianship <http://www.lawreform.vic.gov.au/wps/wcm/connect/justlib/Law+Reform/Home/Current+Projects/G uardianship/> at 27 September 20 10 . The Northern Territory Law Reform Committee, a non-statutory committee established to advise the Attorney-General on law reform, reviewed its legislation and made recommendations for reform in Report of the Powers of Attorney Act and Medical Enduring Powers of Attorney, Report No 33 (2009). In 1 99 1 , the Western Australian Law Reform Commission reviewed legislation and published its recommendations in Medical Treatmentfor the Dying, above n 1 0. While legislation was not enacted immediately after the report was published, the recommendations informed later reviews: Western Australia, Parliamentwy Debates, Legislative Assembly, 2 1 June 2006, 406 l b (Jim McGinty) . 1 2 National Health and Medical Research Council, Ethical Guidelines for the Care of People in PostComa Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008). 1 3 Ibid [4.7]. 1 4 See, for example, New S outh Wales Department of Health, Guidelines for End-of Life Care and Decision-Making (2005) [7.5 ] ; [7 .6] ; and New South Wales Department of Health, Using Advance Care Directives (2004). In Queensland, Queensland Health has recently rolled out new documents, policies, procedures and other tools to assist health professionals in recognising and managing patients' wishes in relation to resuscitation and other life-sustaining measures. As part of this initiative, it has also established a website providing advice to consumers and health professionals about advance care planning and advance health directives: Queensland Government, Advance Care Planning <http://www.health.gld.gov.au/advance-care-planning/> at 27 September 20 1 0. The Western Australian Government has also established a website that provides detailed information about advance care directives: Government of Western Australia, Department of Health, Advance
37
The implications of advance directives for medical practice have also been
considered by peak medical organisations, and advice has been provided to medical
practitioners. The Australian Medical Association has released two position
statements that consider the role that advance directives play in medical decision
making. 1 5 Last year, the Australian Medical Council added to the resources available
to medical professionals by releasing a publication entitled 'Good medical practice:
A code of conduct for doctors in Australia ' , 1 6 one section of which considered end
of-life care. 1 7
There is also a range of government projects that may have implications for the
regulation or uptake of advance care directives, or which promote their use in the
broader context of advance care planning. 1 8 At the Commonwealth level, the final
report of the National Health and Hospitals Reform Commission was released in
2009. 1 9 While this report deals with health reform at a macro level and makes no
specific recmmnendations about advance directives, the Commission recommends
that advance care planning should be funded and implemented nationally rather than
on a State and Territory basis. 20 In 2007, the Cmmnonwealth House of
Representatives Standing Committee on Legal and Constitutional Affairs
investigated and reported on the adequacy of existing regulation in relation to a range
Health Directives <http:/ /www.health.wa.gov.au/advancehealthdirective/consumers/ahd form.cfin> at 27 September 2010. 15 Australian Medical Association, The Role of the Medical Practitioner in End of Life Care (2007) and Australian Medical Association, The Role of the Medical Practitioner in Advance Care Planning (2006). For commentary on the 2006 Position Statement, see M Parker et al, 'Two steps forward, one step back: Advance care planning, Australian regulatory frameworks and the Australian Medical Association' (2007) 37 Internal Medicine Journal 637. 16 This publication was developed by a working party of the Australian Medical Council on behalf of the medical boards of the Australian States and Territories. 1 7 Australian Medical Council, Good Medical Practice: A Code of Conduct for Doctors in Australia (2009) [3 .12] . 1 8 Advance directives are of interest to various non-government peak organisations. For example, Alzheimer's Australia encourages people to complete advance directives as soon as possible after diagnosis: Decision Making in Advance � Reducing Barriers and Improving Access to Advance Directives for People with Dementia, Discussion Paper No 8 (2006). Alzheimer's Australia NSW has also released a position statement on the topic: Advance Health Care Directives, Position Statement (2008). 19 National Health and Hospitals Reform Commission, A Healthier Future for all Australians, Final Report (2009). 20 Ibid, recommendation 57.
3 8
of legal needs of o lder Australians. 2 1 Recommendations of the Committee included
conducting an education campaign to inform the Australian community about
advance care plmming and preparing advance care directives, and the need to
develop nationally consistent and user-friendly advance care directive
documentation. 22 More recently, work has taken place to progress a national
framework for the development of advance care directives. A consultation draft has
been released for comment by the Clinical, Technical and Ethical Principal
Committee of the Australian Health Ministers ' Advisory Council with a view to
establishing a nationally consistent scheme for advance directives. 23
As a final point, an important theme that arises from the various government and
non-government reviews and reports should be mentioned. While the importance of
enabling competent individuals to complete advance directives is for the most part
encouraged, much of the literature on advance directives considers these documents
in the broader context of advance care plam1ing. Many of the recommendations
p lace greater emphasis on the process of planning future heath care needs, including
the need for good cmmnunication between the patient and health professionals. The
completion of an advance directive is seen as a tool that may facilitate that process. 24
2 1 House of Representatives Standing Committee on Legal and Constitutional Affairs, Older People and the Law (2007). 22 Ibid, recommendations 24 and 25 respectively. 23 Clinical, Technical and Ethical Principal Committee of the Australian Health Ministers ' Advisory Council, A National Framework for Advance Care Directives, Consultation Draft (20 1 0). 24 In Australia, an advance care planning model, 'Respecting Patient Choices ' , was introduced as a pilot program at the Austin Hospital in Melbourne in 2002-2003 . The program establishes a system in which patient preferences for future health care is discussed and documented. The Respecting Patient Choices model has subsequently been rolled out in other hospitals in Victoria and other Australian jurisdictions. The success of this program can be contrasted with the ' SUPPORT' study in the United States. This study involved a large-scale controlled trial that was designed to improve end-of-life decision-making and to reduce the frequency of a mechanically supported and prolonged process of dying. Despite interventions that were designed to obtain patient preferences, improve understanding of outcomes and encourage advance care planning, patient outcomes were not improved. For literature on the SUPPORT study, see A Connors et a!, 'A controlled trial to improve care for seriously ill hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT)' ( 1 995) 274(20) Journal of the American Medical Association 1 59 1 . For further literature arising from this study, see RS Phillips et a!, 'Findings from SUPPORT and HELP: An introduction' (2000) 48(5) Journal of the American Geriatrics Society SOOO I ; J Lynn et al, 'Rethinking fundamental assumptions: SUPPORT's implications for future reform ' (2000) 48(5) Journal of the American Geriatrics Society S2 1 4; J Lynn et a!, 'Ineffectiveness of the SUPPORT intervention: Review of explanations' (2000) 48(5) Journal of the American Geriatrics Society S206. For a review of various models of advance care plmming, see A Street and G Ottmann, State of the Science Review of Advance Care Planning Models (2006). There is a growing body of literature on the process of advance care planning and the role advance directives play in that process . See, for example, S Seal, 'Health advance directives, policy and clinical practice: a perspective on the synergy of an effective advance care planning framework' (20 I 0) 34 Australian Health Review 80; L Collins,
39
2.3 Advance directives in a broader regulatory context:
decision-making for adults who cannot decide
As stated in the introduction, completing an advance directive is only one mechanism
by which a decision to withhold or withdraw medical treatment can be made by or
for a person who lacks decision-making capacity. Both the common law and
legislation provide other means of making such decisions, and there is a body of
literature that explores these other decision-making pathways.
2.3. 1 Common law
Legislation that facilitates decisions to withhold or withdraw is a comparatively
recent development. Therefore, for many years the common law has been the only
recourse for medical professionals and others seeking legal sanction for a decision to
withhold or withdraw treatment. There is a number of ways in which the common
law regulates this field. 25 One way is through the recognition of advance directives
that refuse treatment, and the literature on this is considered later in the chapter. The
other legal pathways turn on whether the commencement or continuation of
treatment is considered to be in the patient 's 'best interests ' . If the treating medical
team reaches the view that the benefits of further treatment do not outweigh the
burdens, it is likely that the treatment will be assessed as not being in the patient ' s
best interests. In this context, the treatment i s sometimes referred to as being ' futile ' .
At cotmnon law, there i s no obligation to provide futile treatment because it will not
be in the best interests of the patient . This was the conclusion reached by the House
S Parks and L Winter, 'The state of advance care plam1ing: One decade after SUPPORT' (2006) 23(5) American Journal of Hospice and Palliative Medicine 378; M Brown, 'Documenting end of life decisions in residential aged care facilities in South Australia' (2005) 29( 1 ) Australian and New Zealand Journal of Public Health 85 ; C Cartwright and M Parker, 'Advance care planning and end of life decision making' (2004) 33( 1 0) Australian Family Physician 8 1 5 ; D Taylor and P Cameron, ' Advance care planning in Australia: overdue for improvement' (2002) 32 Internal Medicine Journal 475; J Vinen, 'Advance care planning and advance directives: time for action ' (2002) 32 Internal Medicine Journal 435; J Mador, 'Advance care planning: Should we be discussing it with our patients? ' (200 1 ) 20(2) Australasian Journal on Ageing 89; D Martin, L Emanuel and P Singer, 'Planning for the end of life' (2000) 356 The Lancet I 672; P Singer et al, 'Reconceptualizing advance care planning from the patient's perspective' ( 1 998) 1 5 8 Archives of Internal Medicine 879. Compare C Jordens et al, 'From advance directives to advance care planning: Current legal status, ethical rationales and a new research agenda' (2005) 35(9) Internal Medicine Journal 563 in which the authors suggest that it should not be assumed that advance directives have a role to play in advance care planning. 25 For a comprehensive review of the common law avenues, see L Willmott, B White and S Then, 'Withholding and Withdrawing Life-Sustaining Medical Treatment' in B White, F McDonald and L Willmott (eds) , Health Law in Australia (Thomson, 20 10) eh 1 3.
40
of Lords in the landmark case of Airedale NHS Trust v Bland (Bland).26 That case
involved a 1 7 year-old male, Tony Bland, who was seriously injured when a football
stadium collapsed. As a result of injuries to his lungs, the supply of oxygen to his
brain was interrupted and he sustained catastrophic and irreversible brain damage.
Bland was in a persistent vegetative state, and there was no prospect of recovery.
Bland ' s treating team and family were of the view that life-sustaining measures
should be withdrawn and Tony Bland be allowed to die. The House of Lords
considered that the continued provision of artificial hydration and nutrition was not
in Tony Bland ' s best interests, as it merely prolonged his life without any prospect of
his condition improving. If the treatment is not in the patient 's best interests, the
medical team cannot be under a legal obligation to provide it. Withdrawal (or
withholding) treatment therefore may be lawful.
In terms of legal sanction in such a case, there are potentially two legal pathways.
First, the court may be called upon to grant declaratory relief that it would be lawful
to withhold or withdraw treatment. Declaratory relief of this kind was indeed
granted in England in Bland27 and also in the New Zealand case of Auckland Area
Health Board v Attorney-General. 28
Alternatively, a superior court exercising parens patriae jurisdiction might be asked
to give consent to, or authorise, the withholding or withdrawing of treatment. Again,
such consent or authorisation would only be provided if the withholding or
withdrawal of treatment were considered to be in the best interests of the patient. As
considered above, the futility or otherwise of treatment is relevant in assessing best
interests. Consent to withdrawing artificial nutrition and hydration was granted by
the New Zealand High Court in Re G, 29 a case involving a man, G, who suffered
severe brain damage as a result of a car accident. Attempts to resuscitate him over
the previous 1 8 months had failed, and there was no prospect of recovery. On the
26 [ 1 993] AC 789. 27 Ibid. 28 [ 1 993] 1 NZLR 23 5 . Compare Australian Capital Territory v JT [2009] ACTSC 1 05 where such relief was sought in relation to a man whose psychiatric illness manifested itself in religious obsessions leading to extreme fasting. The Supreme Court of the Australian Capital Territory held that treatment would not be futile as the provision of artificial nutrition and hydration would keep the man alive. 29 [ 1 997] 2 NZLR 2 0 1 .
4 1
facts of the case, the court concluded that the cessation of treatment was in G ' s best
interests and, therefore, the court was prepared to consent to withdrawing treatment .
Bland was a landmark decision as it was the first time an English court declared that
it was lawful to withdraw treatment from an adult who lacked capacity, the
consequence of which would be the certain death of that person. There has been a
handful of decisions post-Bland also dealing with the withdrawal of life-sustaining
medical treatment, including the two New Zealand decisions referred to above. Not
surprisingly, Bland and the subsequent decisions have generated considerable
commentary. Some have expressed concern about the potentially dangerous path
that the common law had embarked upon, and the lack of emphasis placed on the
principle of sanctity of life when determining that 'best interests' should be the
criterion guiding decisions about withholding or withdrawing treatment.30 An
associated issue that has been the subject of some commentary is whether the
common law is ethically or jurisprudentially justified in concluding that treatment
can be withheld or withdrawn on the basis of a medical professional ' s assessment of
best interests,3 1 or whether an alternative criterion or decision-making process is
preferable.32 There is also some literature that is descriptive of the law? or provides
a comparative analysis of legal regimes in other jurisdictions. 34
30 See, for example, JM Finnis, 'Bland: Crossing the rubicon?' ( 1 993) 1 09 Law Quarterly Review 329. There has also been commentary on the need to assist clinicians in determining what treatment will or will not be regarded as being in a person' s 'best interests' : A Samanta and J Samanta, 'End of life decisions' (2005) British Medical Journal 33 1 . 3 1 C Witting, 'Medical decision-making for the incompetent ( 1 996) 3 Journal of Law and Medicine 377; D Lanham, ' Withdrawal of artificial feeding from patients in a persistent vegetative state' ( 1 994) 6( 1 ) Current Issues in Criminal Justice 1 35 ; I Freckelton, 'Withdrawal of life support: The "persistent vegetative state" conundrum' (1 993) 1 Journal of Law and Medicine 35 ; B McSherry, 'Death by the withholding of medical treatment and death by lethal injection: Is there a difference?' ( 1 993) 1 Journal of Law and Medicine 7 1 . See also J Keown, 'Beyond Bland: A critique of the BMA guidance on withholding and withdrawing medical treatment' (2000) 20( 1 ) Legal Studies 66 where the author is critical of the post-Bland guidance developed by the British Medical Association regarding when it would be appropriate to withhold or withdraw artificial nutrition and hydration on patients other than in a persistent vegetative state; T Faunce, 'Re Herrington: Aboriginality and the quality of human rights jurisprudence in end-of-life decisions by the Australian judiciary' (2007) 1 5 Journal of Law and Medicine 20 1 where the author is critical, not of the test of best interests, but of the failure of the Victorian Supreme Court to engage in a detailed review of relevant primary material on end-of-life in an attempt to develop the jurisprudence in this complex area; and B White, L Willmott and J Allen, 'Withholding and withdrawing life-sustaining treatment: Criminal responsibility for established medical practice?' (20 1 0) 1 7 Journal of Law and Medicine 849 where the authors consider the potential criminal implications of withdrawing treatment in Queensland, even when that course is in the best interests of the patient. 32 L Willmott and B White, 'A model for decision making at the end of life: Queensland and beyond' (2006) 25 Medicine and Law 20 1 ; T Faunce and C Stewart, 'The Messiha and Schiavo cases: Thirdparty ethical interventions in futile care disputes' (2005) 1 83 (5) Medical Journal of Australia 26 1 ; N
42
As observed above, the notion of ' futility' of treatment is critical in an assessment of
a patient 's 'best interests ' . Yet the precise meaning of the tenn 'futility' is not
without controversy, and has been central to a number of recent high profile cases.
In the United States, the sad and prolonged battle about whether artificial nutrition
and hydration was futile and should be withdrawn from Terri Schiavo was the
subject of international media scrutiny, and even drew comments from the then
President of the United States, George W Bush, and the former pope, John Paul II.
The issue of what constitutes futile treatment also attracted media attention in
England when Mr Burke, a 46 year-old man diagnosed with a congenital
degenerative brain condition, challenged the legality of the guidelines of the General
Medical Council concerning the withholding and withdrawal of life-prolonging
treatment . Mr Burke was concerned that when his condition deteriorated, artificial
nutrition and hydration might be withdrawn from him against his wishes if medical
professionals concluded that such treatment would be futile. 35 Australia has also
witnessed some high-profile cases about whether treatment could be withdrawn on
the grounds of futility. In Messiha v South East Health, 36 for example, the New
South Wales Supreme Court refused to interfere with a decision of Mr Messiha's
treating team that life-sustaining measures should be withdrawn. The unanimous
evidence before the Court was that the treatment was futile, except to the extent that
it would briefly prolong Mr Messiha' s life.
Peart and G Gillett, 'Re G: A life worth living?' (1998) 5 Journal of Law and Medicine 239; C Stewart, 'Who decides when I can die? Problems concerning proxy decisions to forego medical treatment' (1997) 4 Journal of Law and Medicine 3 86; G Gillett, L Goddard and M Webb, 'The case of Mr L: A legal and ethical response to the court-sanctioned withdrawal of life-support' (1995) 3 Journal of Law and Medicine 49. 33 C Stewart, 'Managing death and the law' , (2008) 86 Precedent 4; A Rothschild, 'Capacity and medical self-determination in Australia' (2007) 14 Journal of Law and Medicine 403; RJ Young and A King, ' Legal aspects of withdrawal of therapy' (2003) 31(5) Anaesthesia and Intensive Care 501; L Skene, 'When can doctors treat patients who cannot or will not consent' (1997) 23 Monash University Law Review 77; M Eburn, 'Withdrawing, withholding and refusing emergency resuscitation ' (1994) 2 Journal of Law and Medicine 131. 34 R Jox et al, ' Substitute decision making in medicine: Comparative analysis of the ethico-legal discourse in England and Germany' (2008) 11 Medical Health Care and Philosophy 154; D Mendelson and T Stoltzfus, 'A comparative study of the law of palliative care and end-of-live treatment' (2003) 31 Journal of Law, Medicine and Ethics 130; D Mendelson, ' Jurisprudential aspects of withdrawal of life support systems from incompetent patients in Australia' (1995) 69 Australian Law Journal 259. 35 While Mr Burke was successful at first instance before Munby J: R (Burke) v General Medical Council [2005] QB 424, that decision was overturned by the Court of Appeal on appeal: R (On the Application of Burke) v The General Medical Council [2006] QB 273 . 36 Isaac Messiha (By his Tutor Magdy Messiha) v South East Health [2004] NSWSC 1061.
43
There is a body of literature on the subject of futility. Some of that literature
considers the difficulty in determining when treatment will be futile, and calls for
more clinical guidance on the issue. 37 There is also literature that both describes and
critiques the current law that there can be no obligation on medical professionals to
provide treatment that they regard to be futile. 38
2.3.2 Guardianship legislation
This thesis considers legislation that governs the ability of a competent individual to
complete a binding advance directive. Guardianship legislation, which now exists in
all Australian States and Territories, is of more general application. These statutes
facilitate health care decisions being made by someone on behalf of the adult who
lacks capacity. Such a person is sometimes referred to as a 'substitute decision
maker.39 A substitute decision-maker can be someone who is appointed by the adult
before he or she loses capacity under an instrument such as an enduring power of
attorney, or someone appointed by a guardianship tribunal, or someone deemed to be
a decision-maker by the relevant legislation. While such a person will may have
power to make decisions about health matters, there is uncertainty in some
jurisdictions about whether such a substitute decision-maker will always be
empowered to make decisions about withdrawing or withholding life-sustaining
medical treatment.
37 See, for example, I Kerridge, K Mitchell and J McPhee, 'Defining medical futility in ethics, law and clinical practice: An exercise in futility?' ( 1 997) 4 Journal of Law and Medicine 235. Compare C Stewart, ' Health services and the right to live: When can I demand life saving medical treatment?' ( 1 997) 1 (2) Macarthur Law Review 3 1 0 where, in the context of the facts of Short! and v North/and Health Limited [ 1 998] 1 NZLR 433, he noted the assessment of a hospital not to provide lifesustaining medical treatment despite such course being contrary to the wishes of the patient and his family. See also Northridge v Central Sydney Area Health Service (2000) 50 NSWLR 549, where the New South Wales Supreme Court disagreed with a decision of the patient's treating team for antibiotics and artificial nutrition to be withdrawn and a ' do not resuscitate order' to be placed on the patient. In the opinion of the Court, the decision that such treatment was futile was premature. 38 See, for example, L Willmott, B White and D Cooper, ' The Schiavo decision: Emotional, but legally controversial?' (2006) 1 8 Bond University Law Review 1 32 ; T Bowen and A Saxton, 'New developments in the law withholding and withdrawal of medical treatment' (2006) 14(5) Australian Health Law Bulletin l ; D Gurnham, ' Losing the wood for the trees: Burke and the Court of Appeal' (2006) 14 Medical Law Review 253 ; S Bums, 'The battle for patient autonomy' (2006) 1 56 New Law Journal 1 632; L Skene, 'The Schiavo and Korp cases: Conceptualising end-of-life decision-making' (2005) 13 Journal of Law and Medicine 223 ; Faunce and Stewart, above n 32, 26 1 ; B White and L Willmott, 'Futility, finances and families: Decisions to withdraw life-sustaining medical treatment' (2004) 1 3(4) Australian Health Law Bulletin 37 . 39 Guardianship legislation also facilitates the appointment of a substitute decision-maker to make other kind of personal decisions as well as fmancial decisions.
44
There is an emerging body of literature that considers guardianship legislation in the
context of the ability of a substitute decision-maker to refuse the administration of
life-sustaining medical treatment, or to consent to the withdrawal of such treatment
from an adult who lacks capacity. 40 However, the literature has focused to a larger
degree on the legislation in New South Wales, Victoria and Queensland where there
have been some anomalies or complexities in either the legislation or case law. In
New South Wales, for example, there have been decisions of both the Guardianship
Tribunal and the Administrative Decisions Tribunal about whether a substitute
decision-maker with the power to consent to medical treatment may direct the
withholding or withdrawal of life-sustaining treatment.4 1 In Victoria, prior to the
decision of the Supreme Court of Victoria in B WV v Gardner, 42 there was
uncertainty about whether an agent appointed under an enduring power of attorney
(medical treatment) could refuse artificial nutrition and hydration for a person who
lacked capacity.43 The legislation in Queensland has also proved to be problematic
40 See, for example, Willmott, White and Then, above n 25, eh 1 3 ; Rothschild, 'Capacity and medical self-determination in Australia ', above n 33 , 403 ; M Howard, 'Principles for substituted decisionmaking about withdrawing or withholding life-sustaining measures in Queensland: A case for legislative reform' (2006) 6(2) Queensland University of Technology Law and Justice Journal l 66; L Wilhnott and B White, 'Charting a course through difficult legislative waters: Tribunal decisions on life-sustaining measures' (2005) 1 2 Journal of Law and Medicine 44 1 ; M Book, 'Withholding or withdrawing life sustaining treatment: New legislation in WA' (2005) 1 3(9) Australian Health Law Bulletin I 0 I ; S Morris, 'The experience of the Victorian Civil and administrative Tribunal in relation to the Victorian Medical Treatment Act ' (2005) Australasian Journal of Ageing S36; A Rothschild, 'Gardner; Re BWV: Resolved and umesolved issues at end of life' (2004) 1 1 Journal of Law and Medicine 292; P MacFarlane, 'What is food? - Withdrawal of nutrition and hydration and other matters ' (2003) 24 Qld Lawyer 1 3 5 ; Stewart, 'Who decides when I can die? Problems concerning proxy decisions to forego medical treatment', above n 32, 3 86. 4 1 Compare the comments on the ambit of the power to consent to medical treatment that was reached in the following three cases: WK v Public Guardian (No 2) [2006] NSW ADT 1 2 1 (Administrative Decisions Tribunal); BAH [2007] NSWGT I [2007] NSWGT 1 (Umeported, Guardianship Tribunal, 5 February 2007); and FI v Public Guardian [2008] NSWADT 263 (Administrative Decisions Tribunal) . For commentary on this aspect of the New South Wales legislation, see T Bowen and A Saxton, 'The NSW Guardianship Act - how far can it go?' (2006) 1 5 ( 1 ) Australian Health Law Bulletin 1 ; D Giles and R Townsend, 'End-of-life decisions and the NSW Guardianship Act: A square peg in a round hole? The law and clinical practice' (2006) 1 5( 1 ) Australian Health Law Bulletin 4. 42 (2003) 7 VR 487. 43 Under the Medical Treatment Act 1 988 (Vie), a person who is appointed as an agent under an enduring power of attorney (medical treatment) has, in specified circumstances, the authority to refuse medical treatment. The Supreme Court of Victoria held that the provision of nutrition and hydration artificially constituted ' medical treatment' for the purpose of the legislation. For commentary on the Victorian legislation and the ability of a substitute decision-maker to cease artificial nutrition and hydration, see M Ashby and D Mendelson, 'Gardner; re BWV: Victorian Supreme Court makes landmark Australian ruling on tube feeding' (2004) 1 8 1 (8) Medical Journal of Australia 442; D Mendelson and M Ashby, 'The medical provision of hydration and nutrition: Two very different outcomes in Victoria and Florida' (2004) 1 1 Journal of Law and Medicine 282; M Ashby and D Mendelson, 'Natural death in 2003 : Are we slipping backwards? ' (2003) 1 0 Journal of Law and
45
in some respects. The relevant legislation specifically empowers substitute decision
makers to refuse life-sustaining medical treatment .44 The difficulty raised by the
Queensland legislative scheme is that consent must be obtained before life-sustaining
treatment can be withheld or withdrawn, and that consent is required even if the
provision of that treatment would be futile in the circumstances of the case. Such a
situation has significant implications for medical practice, and has been the subject of
academic and other comment. 45
2.4 Literature describing common law regulation of advance
directives
The common law recognition of advance directives is a relatively recent
phenomenon. In England, the right of a competent adult to refuse life-sustaining
medical treatment in anticipation of a medical situation was recognised in 1 992 by
Lord Donaldson in Re T (adult: refusal of treatment) .46 There followed a handful of
decisions in the 1 990s and 2000s where comis were asked to adjudicate on whether
the directive made by a competent adult should compel the withholding or
Medicine 260; S Linden, 'Refusal of medical treatment - clarification of rights and responsibilities ' (2003) 1 1 Australian Health Law Bulletin 61 . See also Kmp (Guardianship) [2005] VCAT 779, where a decision had to be made about the continued provision of life-sustaining treatment to Maria Korp. In this high-profile case, Korp was put on life support after she was assaulted, bound and left in the boot of a car for several days. As a result of this incident, Korp was left unconscious and there was no prospect of her ever regaining consciousness. The Public Advocate was appointed to decide on her future treatment. For a consideration of this case, see Skene, 'The Schiavo and Korp cases: Conceptualising end-of-life decision-making', above n 38, 223 . 4 4 Under the Guardianship and Administration Act 2000 (Qld), a substitute decision-maker who has power to make a decision about health care will also have power to make a decision about whether life-sustaining medical treatment should be withheld or withdrawn because the definition of 'health care' expressly includes such a decision: Guardianship and Administration Act 2000 (Qld) sch 2 s 5(2). 45 For commentary on this aspect of the Queensland legislation, and the legislation more generally, see M Parker, 'Futile choices: Wooing doctors to acknowledge the law in Queensland' (20 1 0) 1 8 Journal of Law and Medicine 3 2; Queensland Law Reform Commission, A Review of Queensland's Guardianship Laws Discussion Paper, above n 1 1 ; and B White and L Willmott, Rethinking LifeSustaining Measures: Questions for Queensland (2005) Queensland University of Technology <http://eprints .qut.edu.au/7093/> at 27 September 2010 . The potential obligation on a health professional to provide futile treatment in South Australia pursuant to the Consent to Medical Treatment and Palliative Care Act 1995 (SA) has also been considered: see L Skene, 'Withholding and withdrawing treatment in South Australia when patients, parents or guardians insist that treatment must be continued' (2003) 24 Adelaide Law Review 1 6 1 . 46 [ 1 992] 4 All E R 649, 653.
46
withdrawal of treatment.47 By 2003 , Munby J described the law as ' all too well
known to require either description or analysis ' . 48
Less case authority exists in Australia. Despite the dearth of case authority, it was
widely accepted that the common law as espoused in England also represented the
law in Australia. 49 It was not until 2009 that the matter was tested in Hunter and
New England Area Health Service v A, 5° and the New South Wales Supreme Court
held that an advance directive which refused treatment should be followed, as it was
valid and applicable to the circumstances that had arisen. 5 1
Many commentators have written about advance directives. 52 When advance
directives were first contemplated as a potential mechanism for conveying treatment
instructions, the commentary was typically more general in nature, the focus being
on speculation about how effective such an instrument may or may not be for that
purpose, and how the law governing advance directives was likely to develop. 53 As
47 These cases are explored in the 2nd paper, Lindy Willmott, 'Advance directives refusing treatment as an expression of autonomy: Do the courts practise what they preach?' (2009) 38(4) Common Law World Review 295 (which is reproduced in eh 4 of this thesis) . 48 HE v A Hospital NHS Trust [2003] 2 FLR 408, [ 1 9] . 4 9 This accords with the view expressed by the Queensland Law Reform Commission in Assisted and Substituted Decisions: Decision-Making by and for People with a Decision-Making Disability, Report No 49 ( 1 996) Volume 1 , 348, 357. Further, although not expressly addressing the point, the Victorian Court of Appeal in Qumsieh v Guardianship and Administration Board & Anor [ 1 998] VSCA 45; and the High Court in refusing special leave to appeal in Qumsieh v Pilgrim (Unreported, High Court or Australia, McHugh and Callinan JJ, 1 1 February 2000) seemed to accept that a common law advance directive would be binding in that jurisdiction. 50 (2009) 74 NSWLR 88. 5 1 This can be contrasted with the approach taken by quasi-judicial bodies when called upon to adjudicate on the validity or applicability of advance directives: Qumsieh v Guardianship and Administration Board (Unreported decision, Guardianship and Administration Board, L Pilgrim, 24 February 1 998); and In AB (Application for Consent to Medical Treatment) (Unreported, New South Wales Guardianship Tribunal, 6 April 2004) as considered by C Stewart, 'Advance Directives: Disputes and Dilemmas' in I Freckelton and K Petersen (eds), Disputes and Dilemmas in Health Law (The Federation Press, 2006) 38 , 49-50. 52 The regulation of advance directives typically feature in health law and ethical texts: see, for example, B White, F McDonald and L Willmott (eds), Health Law in Australia (Thomson, 20 1 0) [6 .50] , [ 1 3 . 1 00] ; J Mcilwraith and B Madden, Health Care and the Law (Thomson Lawbook, 51h ed, Sydney, 20 1 0) [5 . 1 3 5] -[45 ] ; I Kerridge, M Lowe and C Stewart, Ethics and Law for the Health Professions (Federation Press, 3rct ed, 2009) 266-70; L Skene, Law and Medical Practice (Butterworths, 3rct ed, 2008) [5 .8] ; J Devereux, A ustralian Medical Law (Cavendish, 3rd ed, 2007) eh 4; I Freckelton and K Petersen (eds), Disputes and Dilemmas in Health Law (The Federation Press, 2006) eh 3; I Freckelton and K Petersen (eds), Controversies in Health Law (Leichhardt: The Federation Press, 1 999) eh 1 7. See also B Collier, C Coyne and K Sullivan (eds), Mental Capacity: Powers of Attorney and Advance Health Directives (The Federation Press, 2005). 53 See, for example, I Kenidge et al, 'Topics for attention: Advance directives' ( 1 997) 5 Issues Paper, The Australian Institute of Health Law and Ethics; Mendelson, above n 34, 259; D Morgan, ' Odysseus and the binding directive: Only a cautionary tale?' (1 994) 14 Legal Studies 4 1 1 . See also s
47
advance directives became more common in clinical practice, the case law on their
validity and applicability increased. The literature then shifted to a closer
examination of when advance directives would operate, and it is this literature which
is considered below.
2.4. 1 Prerequisites for the operation of an advance directive at common law
Before an advance directive that refuses life-sustaining medical treatment will
operate, it must be valid, and must apply to the medical situation that has arisen. The
cotmnon law governing both of these issues is reasonably well settled. To be valid,
the individual must have had sufficient capacity at the time of giving the directive. 54
In addition, the individual must not have been coerced into making the directive as a
result of undue influence or any other vitiating factor. 5 5 There has also been a
suggestion that, to be valid, an individual must have received a sufficient level of
information before making the advance directive. However, there is not a consensus
on this point, and it is discussed further below. 56
In addition to validity, the instruction contained in the advance directive must be
relevant to the medical situation under consideration. 57 This can only be determined
by a careful examination of the language used in the directive, and a consideration of
the context later confronting the individual who has lost decision-making capacity.
The cmmnon law recognises four situations where a valid advance directive will not
govern treatment. The first is where there has been a change of circumstances since
the advance directive was made, and the individual would not have intended that it
apply in the changed circumstances. The second is where the terms of the advance
directive are uncertain or ambiguous, so that it cannot be said to apply to the
circumstances that have arisen. Thirdly, the advance directive will not operate if it is
2.2.2 below and the literature referred to in that section. See also B Squires and F Barr, 'The development of advance care directives in New South Wales' (2005) 24( 1 ) Australasian Journal on Ageing S30 which reviewed the motivations and background to the development of the regulation of advance care directives in New South Wales. 54 The relevant authorities for this position are explored in the first, second, third and fourth papers (reproduced in chs 3 to 6 of this thesis). 55 Ibid. 56 See s 2.4.3 below. 57 The relevant authorities for this position are explored in the first, second, third and fourth papers (reproduced in chs 3 to 6 of this thesis).
48
based on incorrect information or an incorrect assumption to an extent that if that
information or assumption had been correct, the individual would not have intended
the directive to operate. Finally, an advance directive will not apply if it does not
make a decision about treatment in the circumstances that have arisen. In these
situations, medical professionals are not required to follow the advance directive.
Indeed, depending on the particular circumstances of the case, liability may flow
from complying with the directive. Because a medical professional is not required to
follow an advance directive in these circumstances, they are sometimes referred to as
"excuses" for not following a directive.
Some of the literature, including many of the earlier works, focused on preliminary
legal issues of validity and applicability of advance directives. 58 Later works tended
to address these issues more briefly, the focus of analysis shifting to other aspects of
the common law on advance directives including the effectiveness of an advance
directive as a clinical tool, or how it sits within a range of legal decision-making
mechanisms at the end of life. 59 There is also a significant body of literature that
considers advance directives in the context of advance care planning. 60 As the
common law regarding the situations in which an advance directive will not be
applicable is reasonably settled, most of the commentary explores how the courts
58 See, for example, B White, and L Willmott, 'Common law advance directive: An Australian authority' (2009) 29(5) Queensland Lawyer 244; C Stewart and A Lynch, 'Undue influence, consent and medical treatment' (2003) 96 Journal of the Royal Society of Medicine 598; P Biegler et al, 'Determining the validity of advance directives ' (2000) 172(11) Medical Journal of Australia 545; C Stewart, 'Advanced directives, the right to die and the common law: Recent problems with blood transfusions' (1999) 23 Melbourne University Law Review 161; J Blackwood, 'I would rather die with two feet than live with one: the status and legality of advance directives in Australia' (1997) 19(2) University of Queensland Law Journal 270; Kerridge et al, above n 53 . For English commentary on the common law, and the implications on the common law of the recommendations of the Law Commission in, Mentally Incapacitated Adults and Decision-Making: Medical Treatment and Research, Consultation Paper No 129 (1993), see K Stem, 'Advance directives' (1994) 2 Medical Law Review 57. 59 See, for example, Rothschild, 'Capacity and medical self-determination in Australia' , above n 33, 403; Stewart, 'Advance Directives: Disputes and Dilemmas' , above n 51, eh 3 ; C Stewart, 'The Australian experience of advance directives and possible future directions' (2005) 24 Australasian Journal on Ageing S25; B White and L Willmott, 'Will you do as I ask?: Compliance with instructions about health care in Queensland: Compliance with instructions about health care in Queensland' (2004) 4 Queensland University of Technology Law and Justice Journal 77. See also T Faunce, J Bai and H Russell, 'Withdrawing treatment at the direct or indirect request of patients or in their best interests: HNEAS v A; Brightwater CG v Rossiter; and ACT v JT' (2009) 17 Journal of Law and Medicine 349 where the authors comment on the recent trilogy of end-of-life cases which have been considered in superior courts in Australia. 60 See above n and associated text.
49
apply the law to the facts of a particular case, 6 1 rather than the nature or the ambit of
the excuses themselves.
2.4.2 Consequences of non-compliance with an advance directive
The legal consequences of treating an individual who has completed a valid and
applicable advance directive refusing treatment are potentially serious. The treating
medical professional could be both criminally and civilly liable for providing
treatment without consent. It is also possible that the potential implications may be
broader than an action in assault . While such causes of action are beyond the scope
of this thesis, they are relevant in the broader context of the regulation of advance
directives and, in the Australian context, have been the subject of examination by
Stewart.62
2.4.3 Gaps in the literature
There are two aspects of common law regulation that warrant closer attention in the
literature. These are explored below, and the way this thesis addresses those gaps is
explored in section 2 . 8 .
Need for an advance directive to be based on sufficient information
At times it has been asserted that an advance directive will be valid only if the
individual concerned was sufficiently informed before completing it. The argument
is that unless an individual receives relevant information, he or she is unable to make
an informed decision about refusing treatment. Therefore such a decision as
recorded in an advance directive, could not be valid. Authority for this approach is
usually sourced to the statement of Donaldson MR in Re T (adult: refusal of medical
treatment), that a direction in an advance directive either consenting to treatment or
refusing it, may not be a valid consent or refusal if it were not an ' informed '
decision. 63 Kennedy and Grubb interpret this case as requiring the person to be
6 1 The relevant commentary is explored in s 2. 7 below.
62 Stewart, 'Advance Directives: Disputes and Dilemmas' , above n 5 1 , 38 ; Stewart, 'Advanced
directives, the right to die and the common law: Recent problems with blood transfusions ', above n 58 , 1 6 1 . See further s 2.7 . 1 below. 63 [ 1 992] 4 All ER 649, 663 .
50
aware of the 'nature and effect of the procedure' that he or she is refusing. 64
Michalowski, while not expressly relying on Re T (adult: refusal of medical
treatment) for support, states that an advance refusal of treatment will only be valid if
the individual had been ' informed in broad terms of the nature and purpose of the
procedure' .65 Similarly, Biegler et al refer to the need of an advance directive to be
'based on an informed opinion' . 66 Eburn, although considering the validity of an
advance refusal of cardio-pulmonary resuscitation only, suggests that the person
must be 'mentally competent and properly informed' . 67
There has also been some support for the opposing position. Maclean comments that
' [i]f self-determination is the driving force behind advance directives, then the
individual should be allowed to choose how well informed the decision is ' . 68
While there has been commentary that supports each side of this debate, the literature
to date has not engaged in detail with the legal principles that underpin the issue. As
a result, there has not been a careful examination of whether the statement of
Donaldson MR, if it purports to require an advance refusal to be based on sufficient
information, is justifiable on the basis of established legal authority.
Standard of proof
It is only in a rare case that a court or tribunal is called upon to make an assessment
about the validity and/or applicability of an advance directive that refuses life
sustaining medical treatment. However, in those cases, the consequences of the
decision are potentially grave. A finding that the advance directive is valid and
applicable will result in life-sustaining medical treatment being withdrawn, and the
likelihood that the individual will die. The issue of the standard of proof that is
applicable, then, is important. Does the determining body need to be satisfied as to
the validity and applicability of an advance directive on the balance of probabilities,
beyond reasonable doubt, or to some other standard? The standard of proof was
64 I Kennedy and A Grubb, Medical Law (Butterworths, 3rd ed, 2000) 2037. 65 S Michalowski, 'Advance refusals of life-sustaining medical treatment: The relativity of an absolute right' (2005) 68 Modern Law Review 958, 958. 66 Biegler et al, above n 58, 547. 67 Ebum, above n 33, 1 33 . 68 A Maclean, 'Advance directives and the rocky waters of anticipatory decision-making' (2008) 16 Medical Law Review I , 14 .
5 1
expressly considered by Munby J m HE v A Hospital NHS Trust, 69 where he
comments in the following terms:
[23] Burden of proof: in my judgment, although the burden of proof on the issue of capacity is on those who seek to dispute it, the burden of proof is otherwise on those who seek to establish the existence and continuing validity and applicability of an advance directive. So if there is doubt that doubt falls to be resolved in favour of the preservation of life. [24] Standard of proof: clear and convincing proof is required. 70
Despite the significance of this issue, and the onerous terms in which Munby J
describes the burden on the person seeking to establish the validity and applicability
of the advance directive, there has been comparatively little consideration of the
issue in the literature. Stewart has examined this issue in the context of an advance
directive refusing life-sustaining treatment, but only in a relatively limited way. 7 1
2 . 5 Literature describing statutory regulation
Legislation governing advance directives now operates in six of Australia's eight
jurisdictions. 72 Broadly speaking, the legislation regulates the validity of an advance
directive (including any formal requirements), when an advance directive can be
completed, circumstances in which it can operate, and situations in which it need not
be followed by the medical professional who is treating the adult. The statutes are
quite diverse in how they regulate these matters. This diversity is likely to stem from
the fact that they were enacted progressively over a period of almost three decades,
commencing with the (now repealed) Natural Death Act 1983 in South Australia,
with the most recent legislation inserted as Part 9B of the Guardianship and
Administration Act 1990 (WA) commencing operation in Western Australian in
201 0. As perhaps would be expected with legislation of this kind, generally speaking
the earlier statutes were narrower in their ambit, and ensured compliance with
previously stated wishes about refusing treatment in more limited circumstances,
such as when the individual is suffering from a terminal illness or is in the terminal
stages of such an illness. By way of contrast, the Western Australian legislation is
69 [2003] 2 FLR 408. 70 Ibid 4 1 5 . 71 Stewart, 'Advance Directives: Disputes and Dilemmas', above n 5 1 , 4 1 -2; Stewart, 'Advanced directives, the right to die and the common law: Recent problems with blood transfusions ', above n 58 1 77-8. 72 Consent to Medical Treatment and Palliative Care Act 1 995 (SA); Guardianship and Administration Act 1 990 (W A) pt 9B; Medical Treatment Act 1988 (Vie); Medical Treatment (Health Directions) Act 2006 (ACT); Natural Death Act 1 989 (NT); Powers of Attorney Act 1 998 (Qld) eh 3 .
52
broader in its operation, and provided the prescribed legislative safeguards are met, a
competent individual may complete a binding advance directive refusing treatment
that will operate in a wider range of situations.
There is some Australian literature that considers advance directive legislation.
Health law and medical ethics texts consider the various legislative frameworks, 73
but some coverage is generally superficial. Some of the earlier journal articles
describe one or more of the South Australian, Northern Territory and Victorian
statutes, as those were the first to be enacted. 74 As legislation was enacted in the
other jurisdictions, the literature became more comprehensive, 75 although some
commentators focused on the legislation in one particular jurisdiction.76 Some ofthis
literature is descriptive in nature, with a focus on an analysis of the particular regime
and the extent to which an advance directive could be made pursuant to it. However,
some conunentators have critiqued the regimes in a broader context. Blackwood, for
example, queries whether a legislative response is necessary, given the status and
development of the common law regime. 77 Others, including Brown and Stew art,
consider legislation to be a progressive step, but argue that improvements to end-of-
73 See, for example, White, McDonald and Willmott, above n 52, [6. 2 1 0] , [ 1 3 . 1 50] ; Mcllwraith and Madden, above n 52, [5 . 1 50]-[70] ; Kerridge, Lowe and Stewart, above n 52, 266-70; Skene, Law and Medical Practice, above n 52, [5 .8 ] ; Devereux, above n 52, eh 4; Freckelton and Petersen, Disputes and Dilemmas in Health Law, above n 52, eh 3 ; Frecke1ton and Petersen, Controversies in Health Law, above n 52, eh 1 7. 74 Mendelson, above n 34, 259; Ebum, above n 3 3 , 1 3 1 ; D Lanham and B Fehlberg, ' Living wills and the right to die with dignity' ( 1 99 1 ) 1 8 Melbourne University Law Review 329. See also M Ashby, 'A proposed advance directive format for South Australia' ( 1 994) 2 Australian Health Law Bulletin 89 where he suggests a prototype advance directive for use in South Australia; and M Brown, 'Who would you choose? Appointing an agent with a medical power of attorney' ( 1 997) 1 6(4) Australian Journal on Ageing 1 47 who considers the extent to which older Australians understand the various options available for future medical decisions that are available under the South Australian legislation, including the completion of an advance directive. 75 Rothschild, 'Capacity and medical self-determination in Australia' , above n 3 3 , 403 ; Stewart, 'Advance Directives: Disputes and Dilemmas' , above n 5 1 , 3 8 ; Collier, Coyne and Sullivan, above n 52; Biegler et al, above n 58, 545 ; Kerridge et a!, above n 53. 76 D Porter, 'Advance directives and the persistent vegetative state in Victoria: A human rights perspective' (2005) 1 3 Journal of Law and Medicine 256; M Brown et al, 'Advance directives in action in a regional palliative care service: "Road testing" the provisions of the Medical Treatment Act 1 988 (Vie) ' (2005) 1 3 Journal of Law and Medicine 1 86; Book, above n 40, 1 0 1 ; White and Willmott, 'Will you do as I ask?: Compliance with instructions about health care in Queensland' , above n 59 , 77 ; Mendelson and Ashby, above n 43 , 282 ; Ashby and Mendelson, 'Natural death in 2003 : are we slipping backwards? ' , above n 43, 260; B Stoffell and S Lewis, 'Advance directives in South Australian law' (2000) 8( 1 0) Australian Health Law Bulletin 1 29 ; G Clarke, 'Living wills and the Powers ofAttorney Act 1998 - an opportunity to die with dignity' ( 1 999) 1 9 Proctor 1 8 . See also K Pyra, 'Administration of blood products a recent case' (2006) 14(7) Australian Health Law Bulletin 8 1 which comments on a Queensland case where a person's advance directive did not comply with the formalities of the Powers of Attorney Act 1998 (Qld). 77 Blackwood, above n 58, 270.
53
life care will only occur if advance directives form part of a broader context of
advance care planning. 78 Some commentators have also considered the legislation in
terms of its potential usefulness (or otherwise) in preventing or curbing the provision
of futile treatment in the form of artificial hydration and nutrition. 79
2.5.1 Gaps in the literature
Given that the first statute in Australia governing advance directives was enacted in
1 983 , and legislation now exists in six Australian jurisdictions, there is not as much
literature on the topic as might have been expected. The most notable gaps in the
literature are explored below, and the way this thesis addresses some of these gaps,
are explored in section 2 .9 .
Rationale for legislative reform
Prior to statutory reform, it was widely believed that the common law would
recognise the operation of a valid advance directive. A competent adult was thought
to be able to give an advance directive refusing medical treatment, and that directive
would have to be complied with by a treating medical professional. Indeed, the
decision of the New South Wales Supreme Court in Hunter and New England Area
Health Service v A80 proved this speculation to be correct. It could also be argued,
with some level of confidence, that the cmmnon law provides a satisfactory
regulatory framework for this purpose. Provided that certain requirements relating to
validity and applicability are met, an advance directive that refuses life-sustaining
medical treatment would operate. In this way, the common law is able to balance the
two conflicting principles of sanctity of life and autonomy.
If the common law was thought likely to apply, and if it was also regarded as
achieving a satisfactory balance between the principles of sanctity of life and
autonomy, it can legitimately be asked why legislative reform in the six Australian
78 Stewart, 'The Australian experience of advance directives and possible future directions ' , above n 59, S25 ; M Brown, 'The law and practice associated with advance directives in Canada and Australia: Similarities, differences and debates' (2003) 1 1 Journal of Law and Medicine 59. See also above n 24, and associated text. 79 Brown et a!, above n 76, 1 86. 80 (2009) 74 NSWLR 88.
54
States and Territories was considered to be necessary. 8 1 In most cases, legislation
was enacted following either law reform recommendations or governmental . 82 reviews. Yet, there has been only limited review or critique of those
recommendations and reviews, or of parliamentary debate which occurred when the
legislation was introduced into Parliament . As such, there is only a limited amount
of literature on why such widespread legislative reform has occurred.
Comprehensive comparative analysis of all statutory regimes in Australia
The legislation enacted across the six jurisdictions differs in significant ways. While,
for the most part, they have requirements regarding formalities, they are not uniform.
There are also considerable differences about when the advance directives can be
completed, the circumstances in which they can operate, and the circumstances in
which medical professionals are excused from complying with them. As alluded to
earlier, there has been some analysis of the individual statutory regimes and, in a few
articles, a consideration of a number of the earlier legislative models. However,
there has been very little commentary that undertakes a comparison of the different
legislative models across all facets of regulation. Given the diversity of the various
statutes and the practical significance of legislation governing advance directives, the
paucity of literature in this regard is perhaps surprising.
Continued operation of the common law in some jurisdictions
When legislation is introduced to regulate a field previously governed by the
common law, an important issue is whether the legislation then overtakes the
common law as the sole form of regulation, or whether both the common law and
statute law operates together. The issue is important because, in a number of
jurisdictions, advance directives that refuse life-sustaining measures will not govern
medical treatment in all circumstances. The Queensland legislation is illustrative.
An advance directive o f this kind will operate only where a person is sufficiently
unwell, and the legislation sets out what constitutes the requisite level of sickness. 83
8 1 Indeed, this precise issue was canvassed by Blackwood following the enactment of the legislation in South Australia, the Northern Territory, Victoria and the Australian Capital Territory: Blackwood, above n 5 8, 270. 82 For more detail of such reviews, see s 2 .2 .3 above. 83 Powers of Attorney Act 1998 (Qld) s 3 6(2).
5 5
If the common law continues to apply in Queensland after the enactment of the
Powers of A ttorney Act 1998 (Qld), the advance directive may nevertheless operate
to dictate treatment even though it falls outside the ambit of the legislation. An
equivalent issue arises in Victoria. 84 Despite the simplicity and practical significance
of this issue, the determination of the legal question is quite complex and, at least in
Queensland and Victoria, the position is unclear. It is therefore surprising that so
few commentators have examined the issue in detail and offered a considered
opinion about the continued operation ofthe common law.85
2.6 Literature on autonomy as a normative framework for
regulation of advance directives
One of the objectives of the research undertaken in this thesis is to select a normative
framework against which to evaluate the models of legal regulation of advance
directives. The framework of autonomy was identified as a possible tool for this
purpose, and three grounds for this position were advanced. 86 First, it was observed
that autonomy was a necessary component for the operation of a liberal democracy.
Such a system prioritises individual liberty to the extent that is possible. Autonomy,
encapsulating the right of self-determination, is central to individual liberty. Gerald
Dworkin, one of the most strident advocates of the principle of autonomy, writes
specifically about the need for autonomy to be respected in the realm of health care. 87
Secondly, the central role that autonomy now plays in medical ethics discourse was
observed. This reflects the changing dynamics of the doctor and patient relationship,
shifting from paternalism to greater patient involvement in decisions that affect his or
her health. The final justification was that autonomy is at the heart of legal
84 The Office of the Public Advocate in Victoria suggests that the common law might be negated because of the substitute decision-making regime established by the Guardianship and Administration Act 1986 (Vie): Office of Public Advocate, Practice Guidelines: Not for Resuscitation (2004) eh 1 2, 1 2.4 <http://www.publicadvocate.vic.gov.au/about-us/200/> at 27 September 2010 . 85 A number of commentators seem to assume the continued application of the common law without a detailed engagement of the arguments that support or oppose this proposition. See, for example, Stewart, 'The Australian experience of advance directives and possible future directions ' , above n 59, S26; Ebum, above n 3 3 , 1 36, 1 37 . 86 These grounds are explored in the first paper, Willmott, White and Mathews, above n 2 (reproduced in eh 3) . 87 As Dworkin observes, decisions about medical treatment an individual wishes to receive or refuse are integrally connected to a person's body, and failure to respect those wishes ' is a particularly insulting denial of autonomy' : Gerald Dworkin, The Themy and Practice of Autonomy (Cambridge University Press, 1 988) 1 1 3 .
56
jurisprudence in the context of recogmsmg a competent adult 's right to
contemporaneously refuse life-sustaining medical treatment. While these arguments
provide a justification for using autonomy as a normative framework for the
regulation of advance directives, there is considerable scholarship on this area, and
commentators take a range of different positions on whether autonomy is appropriate
for this purpose. This section explores that literature.
First, reference should be made to the meaning that will be attributed to 'autonomy'
for the purpose of this review. The body of literature that considers the concept of
autonomy is immense. The term ' autonomy' is used in different philosophical and
legal contexts, and the meaning that is ascribed to it varies depending on the
philosophical position taken by the individual, as well as the context in which it is
used. Maclean has written that 'one of the problems with autonomy is that there are
almost as many different conceptions as there are commentators writing on the
subject ' . 8 8 As observed by Beauchamp and Childress in their seminal work,
Principles of Biomedical Ethics, 89 most theories of autonomy require the presence of
' liberty (independence from controlling influences) and agency (capacity for
intentional action) ' . 90 However, beyond this, there is little agreement. The authors
continue that disagreement exists over the meaning of ' liberty' and 'agency' , and on
whether any further conditions are required to achieve autonomy. 9 1
This divergence about notions or conceptions of autonomy is not limited to
philosophical works, and is replicated in the legal commentary that considers the
principle. Coggon, for example, argues that there are three different concepts of
autonomy and, in the context of decisions about medical treatment, judges may come
to a different outcome depending on which notion of autonomy he or she adopts.92
In his recent text, Autonomy, Informed Consent and Medical Law, 93 Maclean
analyses the ethical basis for consent to medical treatment . As part of that analysis,
88 A Mac lean, Autonomy, Informed Consent and Medical Law (Cambridge University Press, 2009) 1 0. 89 TL Beauchamp and JF Childress, Principles of Biomedical Ethics (Oxford University Press, 61h ed, 2009). 90 !bid 1 00. 9 1 Ibid. 92 J Coggon, 'Varied and principled understandings of autonomy in English law: Justifiable inconsistency or blinkered moralism?' (2007) 1 5 Health Care Analysis 235 . 9 3 Maclean, Autonomy, Informed Consent and Medical Law, above n 88 .
57
he groups the various conceptions of autonomy into three categories: the libertarian
approach which sees autonomy as self-determination; the liberal view which requires
also the element of rationality; and the communitarian approach which also requires
some moral content to the concept. 94
It is beyond the scope of this section to review the huge body of literature that is
associated with the different conceptions of autonomy. The focus of this thesis is the
legal regulation of advance directives, and autonomy is proposed as providing an
appropriate nonnative framework for the purpose of critiquing models of regulation.
For this purpose, the nuances of the different conceptions of autonomy are not
critical. All that is required is for a conception of autonomy to be chosen which is
appropriate in the context of the legal regulation of refusing medical treatment. In
the first paper, 'Law, Autonomy and Advance Directives' , Raanan Gillon's
definition of autonomy was cited as it provided a succinct definition that
encapsulated the principle of autonomy:
Autonomy (literally, self rule) is, in summary, the capacity to think, decide and act on the basis of such thought and decision freely and independently and without . . . hindrance. 95
There are, of course, other helpful descriptions of autonomy and, in the context of
medical regulation, the description of autonomy provided by Jackson is appropriate :
The word autonomy - fi·om the Greek autos (self) and nomos (rule) - initially referred to the self-rule of independent cities. It has since been extended to mean individual self-governance, and encompasses a cluster of interests such as liberty, privacy and freedom of choice. In relation to medicine, respect for autonomy tends to mean giving competent adults the right to make their own decisions about their medical treatment.96
In the following sections, two specific aspects of the literature on autonomy are
reviewed. The first is how autonomy is treated in the legal discourse relating to the
regulation of advance directives. Both the common law and legislation is examined,
94 Ibid 11. 95 R Gillon, 'Autonomy and the principle of respect for autonomy' (1985) 290 British Medical Journal l 806 extracted in SL Lowe, ' Autonomous Agency and Consent in the Treatment of the Tenninally Ill' in AH Maehle and J Geyer-Kordesch (eds), Historical and Philosophical Perspectives on Biomedical Ethics: From Paternalism to Autonomy (Aldershot, 2002) 130. 96 E Jackson, Medical Law: Text, Cases and Materials (Oxford University Press, 2006) 14, referring to the work of TL Beauchamp and JF Childress, Principles of Biomedical Ethics (Oxford University Press, 5th ed, 2001) .
58
together with the legal commentary that has considered autonomy within that
context. Secondly, the seminal literature that has considered autonomy in the
broader ethical discourse, but specifically in relation to the regulation of advance
directives, is reviewed.
2.6.1 Autonomy and the legal regulation of advance directives
The principle of autonomy underpins legal regulation both at common law and
pursuant to legislation. The literature on each is considered below.
Common law regulation
The role that autonomy plays in the common law regulation of the refusal of life
sustaining medical treatment by competent adults is not controversial. The right of a
competent adult to self-determination, which emanates from the principle of
autonomy, is expressly stated to underpin the common law. In this context, judges
generally use the language of 'self-detennination' rather than 'autonomy' . The
common law cases that refer to the right of a competent adult to refuse life-sustaining
treatment, either contemporaneously or in advance, are abundant .97 The judges
generally note the tension between the principle of self-determination and the
principle of sanctity of life, and conclude that the principle of self-determination will
always prevail when a competent adult is refusing medical treatment. The judges, in
articulating their reasons for decisions, are brief in their consideration of the role that
autonomy, or the right to self-determination, plays, and do not explore in any depth
why this right prevails over the sanctity of life. Moreover, the judiciary does not
engage with other ethical principles such as beneficience, non-maleficience or justice
which are relevant principles for the medical and broader health professionals when
they engage with issues such as the refusal of medical treatment. This judicial
approach signifies the paramouncy of autonomy in shaping legal principle in this
field.
97 See, for example, H Ltd v J [20 1 0] SASC 1 76, [33 ]-[6]; Hunter and New England Area Health Service v A (2009) 74 NSWLR 88, [5]-[22] ; Brightwater Care Group (!ne) v Rossiter [2009] WASC 229, [24]-[7] ; W Healthcare NHS Trust v H [2005] 1 WLR 834, 838 ; HE v A Hospital NHS Trust [2003] 2 FLR 408, 4 1 6; Re AK (Medical Treatment: Consent) [200 1 ] FLR 129, 1 33-4; Re T (Adult: Refusal of Treatment) [ 1 993] Fam 95, 1 1 2; Airedale NHS Trust v Bland [ 1 993] AC 789, 864.
59
Because the principle of autonomy is so emphatically and expressly stated to
underpin the common law on advance directives, and the refusal of medical
treatment by competent adults more broadly, the literature does not tend to engage
with this issue in any depth. Most of the literature that considers autonomy in the
context of common law regulation of advance directives merely observes the role
that autonomy plays, and explores other aspects of co1mnon law regulation. 98 In
other words, the fact that autonomy underpins the common law is observed, rather
than debated, in the literature.
Statutory regulation
The principle of autonomy is also the driving force behind statutory regulation,
although often not articulated in that way in the parliamentary debates. A review of
the relevant debates reveals that the enactment of legislation in this area is driven by
two imperatives . The first is to enshrine the common law right of a competent
individual to give an advance refusal of medical treatment. This imperative
implicitly recognises the importance of autonomy, as that is the principle that
underpins the common law. The second is integrally related to the first, and is the
need to promote certainty in this field. It is important for a competent individual to
be certain that he or she has a right to refuse treatment in advance, and a doctor must
be confident that he or she will be legally protected if that refusal is complied with.
While there has been some literature describing and critiquing the various legislative
regimes,99 it has not specifically examined the extent to which the principle of
autonomy does or should underpin this kind of regulation.
2.6.2 Autonomy and the ethics of regulating advance directives
In this thesis, autonomy is proposed as an acceptable and justifiable normative
framework against which the merits of legal regulation can be assessed. The
justification for this choice was referred to above and is further articulated in the first
paper, 'Law, Autonomy and Advance Directives ' which is reproduced in chapter
98 See, for example, Michalowski, 'Advance refusals of life-sustaining medical treatment: The relativity of an absolute right' , above n 65, 958; Biegler et al, above n 58, 545 ; J Munby, 'Rhetoric and reality: The limitations of patient self-determination in contemporary English law' ( 1 998) 14 Journal of Contempormy Health Law and Policy 3 1 5 ; Stewart, 'Advanced directives, the right to die and the common law: Recent problems with blood transfusions ' , above n 58, 1 6 1 . 9 9 This l iterature i s explored in s 2 .8 below.
60
three. The use of advance directives as a mechanism to refuse medical treatment,
underpinned by the principle of autonomy, is also supported in some of the literature.
Nevertheless, some commentators argue that there are fundamental flaws in using the
principle of autonomy to justify enforcing an advance directive that refuses medical
treatment where an adult later loses decision-making capacity. The literature that
supports each view is explored below.
Literature that opposes autonomy as a basis for regulating advance directives, and proposed alternative ethical models
The concerns that have been raised about enforcing the right of an individual to
complete a binding advance directive that refuse life-sustaining medical treatment,
and the principle of autonomy that underpins that right, are many-faceted. The first,
and perhaps most fundamental, is the argument that an advance directive which is
completed by a competent individual may lack the moral authority to bind an
individual who later becomes incompetent . An adult who becomes incompetent,
particularly where this incompetence stems from dementia, is a fundamentally
different person from the person who completed the advance directive refusing
treatment. In the same way, the interests, views and wishes of the person with
dementia are, or may be, different from those of the person who completed the
directive. Dresser, probably the best known and most prolific opponent of advance
directives in this situation, stridently argues that a person with dementia should not
be deprived of potentially life-sustaining treatment on the basis of a prior refusal of
the competent individual, especially where the now demented adult would seek to
have such treatment and appears to still enjoy life. 1 00 Dresser and Robertson argue
that the person's earlier competent preferences are not the best indicators of the now
incompetent patient 's best interests. 1 0 1 Other authors have engaged with, and echoed
concerns about, the moral authority of an advance directive where the individual has
100 R Dresser, 'Precommitment: A misguided strategy for securing death with dignity' (2003) 81 Texas Law Review 7; R Dresser, ' Dworkin on dementia: Elegant theory, questionable policy' (1995) 25(6) The Hastings Center Report 32; R Dresser, 'Missing persons: Legal perceptions of incompetent patients' (1994) 46 Rutgers Law Review 609; R Dresser, 'Life, death, and incompetent patients: Conceptual inflill1ities and hidden values in the law' (1986) 28 Arizona Law Review 373 . 1 0 1 R Dresser and J Robertson, 'Quality of life and non-treatment decisions for incompetent patients: A critique of the orthodox approach' (1989) 17 Law, Medicine and Health Care 234.
6 1
undergone psychological change to become, in effect, a different person from the one
who first gave the directive. 1 02
A second category of criticism is based on the fact that many individuals do not wish
to exercise a right to make end-of-life treatment decisions, and would prefer those
decisions to be made by others. Schaefer et al have stated that ' [ m]ore important
than their autonomy and autonomous well-being is that they are involved in
interpersonal, loving and trusting relationships ' (emphasis not added). 1 03 S imilar
views are espoused by Burt1 04 and other authors. 1 05 In support of his views, Burt
refers to a large study conducted in the United States in which families and patients
were assisted to make informed decisions about end-of-life care. Despite such
support, the study revealed that most patients and families did not want to make such
decisions. 1 06
Thirdly, many cmmnentators point to the practical deficiencies of advance directives,
and suggest that these problems undermine autonomy as the ethical principle to
underpin advance directives. Some commentators are critical that directives are not
informed decisions. 1 07 They argue that a decision made when lacking knowledge
1 02 See, for example, A Wrigley, 'Personal identity, autonomy and advance statements' (2007) 24(4) Journal of Applied Philosophy 3 8 1 ; A Maclean, 'Advance directives, future selves and decisionmaking' (2006) 1 4 Medical Law Review 29 1 ; D Degrazia, 'Advance directives, dementia and the "Someone else problem"' ( 1 999) 1 3(5) Bioethics 373; M Tonelli, 'Pulling the plug on living wills: A critical analysis of advance directives' ( 1 996) 1 1 0 Chest 8 1 6; J Teno, H Nelson and J Lynn, 'Advance care planning: Priorities for ethical and empirical research' ( 1994) The Hastings Center Report S32; J Robertson, ' Second thoughts on living wills' ( 1 99 1 ) 2 1 (6) The Hastings Center Report 6; A Buchanan and D Brock, Deciding for Others: The Ethics of Surrogate Decision Making (Cambridge University Press, 1 989) eh 3 , 1 03 - 10 ; A Buchanan, 'Advance directives and the personal identity problem' ( 1 988) 17(4) Philosophy and Public Affairs 278. See also the views expressed by the President's Council on Bioethics, above n 9, which favoured surrogate decision-making over following instructions to refuse treatment which are contained in an advance directive because of the need to protect an incompetent patient's best interests. 1 03 K Schaefer, U Eibach and D Roy, 'The advance directive: An expression of autonomy, but also of care' (2002) 1 8 Ethics and Medicine 1 5 . 1 04 RA Burt, ' The end of autonomy' (2005) Nov/Dec The Hastings Center Report S9. 1 05 See, for example, G Winzelberg, L Hanson and J Tulsky, 'Beyond autonomy: Diversifying end-oflife decision-making approaches to serve patients and families' (2005) 53 Journal of American Geriatrics Society 1 046; Teno, Nelson and Lynn, above n 1 02, S32. 1 06 For literature on this study, see above n 24. 1 07
A Fagerlin and CE Schneider, 'Enough: The failure of the living will' (2004) 34(2) The Hastings Center Report 30; PH Ditto et al, ' Stability of older adults ' preferences for life-sustaining medical treatment' (2003) 22 Health Psychology 605; Dresser, 'Precommitment: A misguided strategy for securing death with dignity' , above n 1 00, 7 ; C Ryan, 'Betting your life: An argument against certain advance directives ' ( 1 996) 22 Journal of Medical Ethics 95; Dresser, 'Dworkin on dementia: Elegant theory, questionable policy' , above n 1 00, 32. For the importance of adequately informing patients when they are completing an advance directive, see D Blondeau et al, 'Comparison of patients' and
62
about a future medical situation, IS likely to differ from a decision that would be
made after a careful consideration of relevant and current information about
treatment options for an existing condition or illness. It would therefore be
dangerous to rely on an earlier uninformed decision. There is also research
suggesting that treatment choices are unstable, and these choices alter as a person's
health deteriorates. 1 08 On this view, advance directives can create difficulties
because they lock in treatment choices made by the adult before he or she loses
capacity. A further criticism is that the directive that is recorded may not, in fact,
represent the person' s wishes. Research suggests that responses can be shaped by
how questions are asked and, therefore, may not be a true reflection of treatment
choice. 1 09 A final criticism is that directives are often general in nature and do not
provide helpful guidance to medical professionals. 1 1 0 These concerns raise the
question of whether the completion of an advance directive will generally be an
effective expression of autonomous choice. 1 1 1
health care professionals' attitudes towards advance directives' (1998) 24 Journal of Medical Ethics 328. 1 08 R Dresser, 'Substituting authenticity for autonomy' (2009) 39(2) The Hastings Center Report 3; TR Fried et al , 'Prospective study of health status preferences and changes in preferences over time in older adults' (2006) 166 Archives of Internal Medicine 313; Dresser, 'Precommitment: A misguided strategy for securing death with dignity' , above n 100, 7; Ryan, above n 107, 95; Dresser, 'Dworkin on dementia: Elegant theory, questionable policy', above n 100, 32. Compare the findings reported in M Danis et al, ' Stability of choices about life-sustaining treatments ' (1994) 120(7) Annals of Internal Medicine 567; L Emanuel et al, 'Advance directives: Stability of patients' treatment choices' (1994) 154 Archives of Internal Medicine 209. 1 09 Dresser, ' Substituting authenticity for autonomy' , above n 108, 3; Fagerlin and Schneider, above n 107, 30; Dresser, 'Precommitment: A misguided strategy for securing death with dignity' , above n 100, 7; Dresser, �Dworkin on dementia: Elegant theory, questionable policy' , above n 100, 32. 1 1 0 Dresser, ' Substituting authenticity for autonomy' , above n 108, 3; A Holt and A Vedig, 'Do advance care directives improve acute care services for older people?' (2006) 185(7) Medical Journal of Australia 406; Fagerlin and Schneider, above n 107, 30; S Hickman et al, 'Hope for the future: Achieving the original intent of advance directives' (2005) Nov/Dec The Hastings Center Report S26A; Dresser, 'Precommitment: A misguided strategy for securing death with dignity' , above n 100, 7; T Thompson, R Barbour and L Schwartz, 'Adherence to advance directives in critical care decision making: Vignette study' (2003) 327 British Medical Journal 1; Dresser, 'Dworkin on dementia: Elegant theory, questionable policy' , above n 100, 32. Note, however, research which suggests that directives may not be followed even if they constitute specific instructions: JM Teno et al. 'Do advance directives provide instructions that direct care?' (1997) 45(4) Journal of the American Geriatrics Society 508. 1 1 1 For additional literature that comments on the practical shortcomings of advance directives, see C Schneider, 'After autonomy' (2006) 41 Wake Forest Law Review 411; E Clough, 'A critique of advance directives and advance directives legislation ' (2006) 11 Appeal: Review of Current Law and Law Reform 16; Street and Ottmann, above n 24; A Sommerville, 'Are Advance Directives Really the Answer? And What was the Question? ' in S McLean (ed), Death, Dying and the Law (Dartmouth, 1996) 29; J Stone, 'Advance directives, autonomy and unintended death' (1994) 8 (3) Bioethics 223; R Dresser, 'Confronting the near irrelevance of advance directives ' (1994) 5 Journal of Clinical Ethics 55 ; Ebum, above n 33 , 131; Robertson, above n 102, 6; A Brett, 'Limitations of listing specific medical interventions in advance directives (1991) 266 Journal of the American Medical Association 825. Such concerns are also detailed by the President's Council on Bioethics, above n 9. For a review
63
The final significant theme emerging from the literature is that there are other more
appropriate ethical principles that should govern end-of-life medical care. Dresser
strongly argues that compliance with an earlier directive refusing care conflicts with
an ethical responsibility to support patients who have lost decision-making
capacity. 1 1 2 Instead, Dresser proposes that the best interests of such a patient should
guide treatment. This view is supported by Wrigley. 1 1 3
Maclean appears to take a modified approach. He suggests that a directive given in
advance should be complied with, but adds the caveat that it should not be followed
if treatment is in the patient 's best interests. 1 1 4 In a similar vein, Donchin, while not
proposing the abandonment of autonomy, suggests that other ethical principles such
as beneficience, justice and equality are also important and should guide patient
care. 1 1 5 Burt advances a shared decision-making model based on a consensus of all
those who are involved in the patient 's care, supported by satisfactory institutional
systems. 1 1 6
Literature that supports autonomy as a basis for regulating advance directives
For more than two decades, commentators have been exploring whether the principle
of autonomy can justify following an advance directive that refuses life-sustaining
treatment, particularly where the person has now lost capacity but retains some level
of consciousness. Ronald Dworkin is the most influential proponent of a competent
individual ' s right to autonomy, and of the need to respect that person's advance
directive which directly flows fi"om that right. 1 1 7 In support of that position, Dworkin
considers two interests: experiential and critical. Experiential interests refer to those
things that we do, and activities that we undertake, purely because we enjoy the
of the earlier literature on these concerns, see Brown, 'The history of advance directives: A literature review' , above n 9, 4. 1 1 2 Dresser, ' Precommitment: A misguided strategy for securing death with dignity', above n 1 00, 7 . 1 1 3 Wrigley, above n 1 02 , 3 8 1 . 1 1 4 Maclean, 'Advance directives, future selves and decision-making, above n 1 02, 29 1 . 1 1 5 A Donchin, ' Understanding autonomy relationally: Toward a reconfiguration of bioethical principles' (200 1 ) 26(4) Journal of Medicine and Philosophy 365. 1 1 6 Burt, above n 1 04, S9. 1 1 7
See, for example, R Dworkin , Life 's Dominion: An Argument about Abortion and Euthanasia (Harper Collins: London, 1 993) and R Dworkin, 'Autonomy and the demented self' ( 1 986) 64 (Suppl 2) The Milbank Quarterly 4.
64
expenence. This could include reading a novel, listening to particular music, or
watching a favourite television program. Critical interests are higher order interests
and refer to core values, beliefs and convictions which are essential to make our lives
good. The manner of death may, for some individuals, be a critical interest. A
person may have a deeply held desire not to accept life-sustaining treatment if
suffering from Alzheimer's disease. An earlier death may, for that person, be
preferable to enduring the ravages of the disease. Dworkin argues that an advance
directive refusing treatment in such a case will promote a person's critical interests.
He continues that such interests should prevail over experiential interests that the
later incompetent adult, who now suffers from Alzheimer's disease, may have in
simple pleasures of life. For that reason, a decision not to receive treatment which
was made when competent should be honoured, even if the now incompetent person
appears to be enjoying life, apparently unconcerned by the effect that the disease is
having on his or her cognitive function.
Dworkin' s work has been considered by almost all commentators in this
controversial field. In addition to the authors who oppose his views, some of whom
are referred to above, many commentators adopt or build on Dworkin' s approach. 1 1 8
Olick, for example, argues that we should 'value, exercise and protect the right to
plan ahead for our health care futures' , 1 1 9 and he is critical of the notion that
incompetent individuals should be treated according to their best interests rather than
as previously stated in an earlier directive. Olick argues that failure to comply with
an earlier directive constitutes a 'harm' because his or her rights have not been
respected. Rich120 and B lustein12 1 also take a position on the moral authority of
advance directives, which is consistent with that espoused by Dworkin.
Nonnan Cantor is another prolific proponent of autonomy, and of a competent
individual ' s interest in bodily integrity and self-determination. Cantor opposes
1 1 8 See, for example, R Dworkin, Life 's Dominion: An Argument about Abortion and Euthanasia (Harper Collins: London, 1 993) and R Dworkin, 'Autonomy and the demented self' ( 1 986) 64 (Suppl 2) The Milbank Quarterly 4. 1 1 9 RS Olick, Taking Advance Directives Seriously (Georgetown University Press, 200 1 ) 3 1 . 1 20 B Rich, 'Personhood, patienthood, and clinical practice' (1 998) 4(3) Psychology, Public Policy, and Law 6 1 0. 1 2 1 J Blustein, ' Choosing for others as continuing a life story: The problem of personal identity revisited' (1 999) 27 Journal of Law, Medicine and Ethics 20.
65
Dresser 's view, expressed above, that an advance directive which refuses medical
treatment lacks moral authority when that competent person loses capacity because
he or she becomes a fundamentally different person. 1 22 Relying on Dworkin's work,
Cantor argues that ' the lifespan of each person's embodiment is a unitary event' . 1 23
In other words, a person' s life cannot be divided into two unconnected existences of
the competent and incompetent self Cantor further observes that this perception of
life being a 'unitary event' is consistent with how people generally see their own
lives, and why they wish to dictate future treatment and non-treatment through an
advance directive. S imilar views have been expressed by Rhoden who opined that
the notion of equating personal identity with psychological continuity 'conflicts with
the ordinary social, moral, and legal ways in which we view persons ' . 1 24 Rho den
continued that ' [ d]eeply embedded in our culture, and, I would suspect, in most
cultures, is the notion that a person is one person, and one person only, from birth
through old age, despite whatever changes and vicissitudes she might undergo ' . 1 25
Ikonomidis and S inger also present a forceful justification of autonomy and its role
in advance care planning. They do concede, however, that autonomy 'does not
account for the importance of personal relationships in the process of advance care
planning' . 1 2 6 They therefore propose, without giving specific details, that the model
evolves to take the value of personal relationships into account. Luttrell and
Sommerville also support the ability of a competent adult to complete an advance
directive that refuses medical treatment. 1 27 They reject the notion that because there
may be inherent risks associated with an advance directive, competent individuals
1 22 See, for example, N Cantor, Advance Directives and the Pursuit of Death with Dignity (Indiana University Press, 1993 ); N Cantor, 'Prospective autonomy: On the limits of shaping one's postcompetence medical fate' (1992) 8(13) Contemporwy Health Law and Policy 13 . In support of autonomy in the context of contemporaneous refusal of life-sustaining treatment, see N Cantor, 'A patient's decision to decline life-saving medical treatment: Bodily integrity versus the preservation of life' (1972) 26 Rutgers Law Review 228. 1 23 N Cantor, 'Prospective autonomy: On the limits of shaping one' s postcompetence medical fate', above n 122, 32. 1 24 N Rhoden, 'Litigating life and death ' (1988) 102 Harvard Law Review 375, 414. 1 25 Ibid. See also M Kuczewski, 'Whose will is it, anyway? A discussion of advance directives, personal identity, and consensus in medical ethics' (1994) 8 (1) Bioethics 27 who suggests a narrative of self which includes both the competent and demented person. 1 26 S Ikonomidis and P Singer, 'Autonomy, liberalism and advance care planning' (1999) 25 Journal of Medical Ethics 522, 526. 1 27 S Luttrell and A Sommerville, 'Limiting risks by curtailing rights: A response to Dr Ryan' (1996) 22 Journal of Medical Ethics 100.
66
should be prohibited from completing them. 1 2 8 They argue that such prohibition
would mark a return to medical paternalism which is not justifiable by reference to
prevailing public expectations.
2.6.3 Gaps in the literature
As explained above, there is a significant body of literature on what is meant by
autonomy, the role it plays in medical ethics, and whether it should be the conceptual
basis that supports the regulation of advance directives. This thesis claims that there
are sufficient grounds to justify autonomy as a nonnative framework against which
legal regulation can be assessed. However, a gap exists in the literature regarding the
precise nature of a regulatory regime that would be consistent with and promote the
principle of autonomy.
Enshrining autonomy in a regulatory framework
An issue that has not received significant consideration in the literature is how legal
regulation should be shaped to adequately enshrine the principle of individual
autonomy. The common law principles that are stated to govern the validity and
applicability of advance directives promote autonomy. However, as revealed in the
second paper, 'Do the courts practise what they preach?' (reproduced in chapter
four), the approach taken by the judiciary in applying the common law principles
may not. This raises the issue of whether some other form of regulation, namely
legislation, can more effectively promote individual autonomy. If that is the case,
the next issue is to determine what features such a regime should comprise. As
considered in the fifth paper, 'A comparative Australian statutory analysis
(reproduced in chapter seven), some statutory provisions promote autonomy, while
other provisions do not. There is a need to further explore the kind of provisions that
are necessary to promote autonomy in this field, and to identify the kind of
provisions which are a barrier to an individual ' s exercise of autonomy.
1 28 Ibid.
67
2 . 7 Literature on critique of the common law
The literature that describes the common law principles that apply to advance
directives was considered in section 2 .4 above. This section reviews the literature
that critiques the common law. Although the body of literature is relatively small,
two themes can be discerned. The first relates to remedies that are available if the
direction in an advance directive is not complied with. The second is about how
common law principles are applied by courts and tribunals.
2.7.1 Inadequacy of remedies for non-compliance with advance directives
The common law that governs advance directives is reasonably settled and relatively
uncontroversial. There are few legal commentators who would suggest that the
relevant principles concerning validity and applicability of advance directives are ill
founded or lacking in some way. The only caveat to this relates to the available
relief where an advance directive refusing treatment is not fo llowed by a medical or
other health professional. Stewart argues that the common law is not sufficiently
well-developed in terms of remedies that may be available if treatment is given
contrary to the instructions contained in an advance directive. 1 29 Using Qumsieh 's
case 1 30 as an example, Stewart explored the possible legal redress that may (or may
not) be available to a person who is provided life-sustaining medical treatment (in
that case, blood transfusions) contrary to the instruction in the advance directive. 1 3 1
After considering a range of potential remedies, Stewart concludes that existing
common law remedies may be insufficient to provide redress in this kind of situation.
Similar concerns have been expressed by Michalowski, who explores whether a
person who is kept alive against his or her will should be able to claim general and
special damages for pain and suffering, mental distress and potential costs of
1 29 Stewart, 'Advance Directives: Disputes and Dilemmas', above n 51, 38 ; C Stewart, ' Qumsieh's case, civil liability and the right to refuse medical treatment' (2000) 8 Journal of Law and Medicine 56. The Irish Law Reform Commission also reviewed the criminal and civil remedies that may be available if treatment was provided contrary to the instruction in an advance directive: Law Reform Commission of Ireland, above n 4, eh 5. In its fmal report, however, the Commission did not recommend that failure to comply with advance directives should attract criminal sanction in a statutory regime governing advance directives: Law Reform Commission of Ireland, above n 4, [ 4.29] . 1 30 (Umeported decision, Guardianship and Administration Board, L Pilgrim, 24 February 1998) . 1 3 1 Stewart, ' Qumsieh 's case, civil liability and the right to refuse medical treatment', above n 129, 56.
68
continued medical treatment if kept alive contrary to his or her expressed
direction. 1 32
2.7.2 Application of common law principles
The common law that governs advance directives is underpinned by the principle of
autonomy. The common law position that a valid and applicable advance directive
which refuses treatment must be complied with, is a clear articulation that an
individual' s right of self-detennination prevails over any state interest in preserving
life. No legal commentator suggests that the common law, as expressed by the
judges, does not prioritise autonomy as the prevailing principle.
There are, however, some commentators who have challenged the rigour with which
the principle of autonomy has guided an application of the common law in individual
cases that come before courts and tribunals. There are a handful of cotmnentators
whose work is relevant in this context. Maclean and Michalowski have been strident
in their criticisms of how the courts have applied the law. Maclean argues that
despite the stated objective of protecting an individual 's autonomy, the way in which
the law on advance directives is implemented ' serves to facilitate the provision of
healthcare, to protect the patient ' s welfare and to protect the healthcare professionals
from liability' . 1 33 In Maclean' s view, any 'protection of autonomy is secondary to
those primary goals ' . 1 34 Maclean reviews a number of the English cases and
suggests that courts are influenced by two factors in determining whether an advance
directive will be held to be valid and enforceable. The first is whether the life of the
individual who has refused treatment would be 'worthwhile' if that person received
the treatment and continued to live. The second is whether the life-sustaining
medical treatment is needed to relieve that person' s suffering. The author concludes
that if either of these questions can be answered affirmatively, the judges are
disinclined to find that the advance directive is valid and applicable. He argues that
judges consider the ' rationality' of the outcome of following an advance directive,
1 32 S Michalowski, ' Trial and error at the end of life - No harm done?' (2007) 27(2) Oxford Journal of Legal Studies 257. 1 33 Maclean, 'Advance directives and the rocky waters of anticipatory decision-making' , above n 68, 2. 1 34 Ibid.
69
and will allow an individual ' s autonomous choice to prevail by a favourable finding
about validity and applicability only if the outcome is a 'reasonable' one.
Michalowski also expressed concern about how the law is applied. In particular, she
queries what she terms the 'presumption in favour of life ' approach which she argues
underpins these decisions. The expressed legal position is that if there is any doubt
about the validity or applicability of advance directives, the doubt must be resolved
in favour of life. 1 3 5 This means that an advance directive refusing life-sustaining
treatment will be held not to govern the treatment decision. Michalowski argues that
this 'bias in favour of life ' inappropriately permeates a range of issues that require
judicial determination. These determinations include an inquiry into capacity to
complete the advance directive, interpretation of an advance directive, and whether
an advance directive continues to be valid .in light of changed circumstances. The
author argues that instead of a bias in favour of life, courts should bring a
'disinterested approach' to each determination. This alternate approach would
recognise that the termination of a person' s life, contrary to a view expressed in an
advance directive, is not the only harm that can result. Michalowski observes that
preserving the life of someone who wishes it to end is also a significant harm that
should be guarded against.
Coggon has also written about judicial approaches that are taken where medical
treatment is refused. This author suggests that the different conceptions that judges
have of autonomy will result in different decisions being made. Indeed, Coggon
suggests that various approaches to autonomy are taken to justify reaching a desired
conclusion in a particular case.
In an earlier article, James Munby QC (as he then was), also commented on the
judicial reluctance to recognise patient self-determination in the broader context of
medical law where such recognition would lead to the death of an individual. 1 36
While observing that courts use the 'rhetoric' of self-determination, Munby points to
a number of contexts in which decisions have effectively prevented that self-
1 35 Re T (Adult: Refusal of Treatment) [ 1 993] Fam 95, 1 1 2; HE v A Hospital NHS Trust [2003] 2 FLR 408, 42 1 . 1 36 Munby, above n 98, 3 1 5.
70
determination from being exercised. These contexts include a finding of incapacity
if a person is contemporaneously refusing treatment that is needed to live, as well as
a finding that an advance directive may not be valid, or is too ambiguous or not
applicable to the circumstances.
There has been less critique on the application of the common law in Australia.
However, Stewart has also commented on the reluctance of judicial and quasi
judicial bodies to engage in a consideration of the evolving conunon law in this
field. 1 37
2.7.3 Gaps in the literature
As outlined above, there has been some critique of the common law that governs
advance directives, and how common law principles have been applied when matters
are litigated. However, some gaps in the literature remain.
Comprehensive examination of all common law cases on advance directives in England and Australia
There are only a small number of reported cases in England and Australia in which
courts or tribunals have been requested to dete1mine whether an advance directive
that refuses life-sustaining medical treatment should be followed. 1 38 Some of these
cases have been critically evaluated, and the relevant literature was reviewed above.
However, there has not been any work which has undertaken an analysis of all of the
reported English and Australian cases in this field. Such an analysis would be
significant. A comprehensive review would enable themes to be drawn, and would
facilitate an assessment of whether similar approaches to regulation of advance
directives are taken by judicial and quasi-judicial bodies in England and Australia.
1 37 Stewart, ' Qumsieh 's case, civil liability and the right to refuse medical treatment' , above n 1 29, 56; Stewart, ' Advanced directives, the right to die and the common law: Recent problems with blood transfusions ' , above n 58, 1 6 1 . 1 3 8 Note also that there are some unreported decisions that relate to the validity and applicability of advance directives : see above n 5 1 .
7 1
Comprehensive analysis of legal reasoning used to justify non-compliance with advance directives
As described above, some commentators have been critical of the way courts and
tribunals have implemented the law when determining whether an advance directive
should be followed. The concern is that the judiciary is reluctant to uphold an
advance directive where that would result in an individual ' s death. However, those
critiques do not contain a detailed examination of the legal reasoning employed to
justify a conclusion that the particular advance directive was either invalid or
inapplicable to the medical context in question. Such an analysis and critique are
critical to support an assertion that courts and tribunals have been unjustifiably
favouring the principle of sanctity of life, and overriding an individual ' s autonomous
choice as set out in his or her advance directive.
2.8 Literature on critique of the advance directive legislation
The literature that describes the legislation govemmg advance directives was
considered in section 2 . 5 above. It was observed that although legislation was first
enacted in 1 983 in South Australia and subsequently passed in other jurisdictions,
literature that describes the current legislation is relatively sparse. There is even less
literature that critically evaluates, as opposed to merely describing, the legislation.
The Australian literature that does exist can be divided into three broad categories
which are explored below.
2.8. 1 Need for advance directives to operate within the broader framework of a dvance care planning
The first category mentioned above, which represents the bulk of the literature, is
that which critiques the overall effectiveness of advance directive legislation in the
broader context of advance care planning. 1 39 Brown was one of the early
commentators on advance care planning in Australia, and in 2003 she reviewed and
compared the legislation that existed in Australia and Canada. 140 One of the themes
1 39 For more literature on this field, see also above n 24. 140 Brown, 'The law and practice associated with advance directives in Canada and Australia: similarities, differences and debates ' , above n 78, 59.
72
that emerged from Brown's research was that the use of advance directive forms
alone was not a desirable approach to end-of- life decision-making. Observing that
very few people actually use the prescribed forms, Brown suggests that the focus
should be less upon the forms and more upon the broader issues that arise as one ' s
life i s coming to an end. To this extent, the completion of advance directives
represents only one aspect of advance care planning. This theme was later echoed by
Stewart when considering possible future directions of advance directives in
Australia. 1 4 1 Also noting that most individuals do not choose to complete an advance
directive, Stew art suggests that they nevertheless may be a useful tool if used as part
of a wider advance care planning process. This commentator suggests that the focus
should be on developing a culture of advance care planning so that patients and
medical professionals engage in a conversation about treatment preferences, with an
advance directive being one way of documenting choices that are made.
Some authors have commented on the need for stakeholders to be educated about
advance directive legislation for that legislation to be successful. One of the findings
of empirical research conducted by Brown et al was that the enactment of legislation
providing for advance directives alone was insufficient to ensure their use. 1 42 In
addition to developing the advance directive fonn, individuals need education,
support and assistance to complete such a form. Similar views were expressed by
Book when commenting on the recent reforms of the Western Australian
legislation. 1 43
2.8.2 Restrictions imposed by legislative regimes
The second category of literature critiques the advance directive statutes themselves.
Eburn considers the legislation in South Australia, the Northern Territory and
Victoria, but only to the extent that they facilitate the completion of advance
directives that refuse cardio-pulmonary resuscitation. 144 He observes the limitations
of the legislation in this context, as the South Australian and Northern Territory
1 4 1 Stewart, 'The Australian experience of advance directives and possible future directions ' , above n 59, S25. 1 42 Brown et a!, above n 76, 1 86. 1 43 Book, above n 40, 1 0 1 . 1 44 Ebum, above n 33, 1 3 1 .
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legislation allows such directives to govern treatment only if the individual is
suffering from a terminal illness. 1 45 In a similar vein, the Victorian legislation allows
an advance directive to be completed only if the person is suffering from a current
condition. It is possible that an individual who does not satisfy these conditions may
wish to complete an advance directive refusing cardio-pulmonary resuscitation.
There is also literature that critiques the Queensland legislation governing advance
directives. White and Willmott identify a range of concerns about regulating
advance directives that arise from the Powers of Attorney Act 1998 (Qld) . 1 46 Many
of these concerns relate to practical aspects of its operation, including the extent to
which medical professionals are protected where they, in good faith, act on an
advance directive which does not comply with formality requirements, or if they do
not act on the directive because they have no knowledge of it. However, criticism is
also levelled at the restrictions on when advance directives that refuse life-sustaining
medical treatment can operate, and the liberty afforded to a medical professional who
chooses not to follow a valid and applicable directive.
2.8.3 Disparate legislative regimes
Finally, there is limited literature that critiques the patchwork of legal regimes that
exist in Australia. In this regard, Brown comments on the inconsistencies across the
Australian statutes, the different terminologies that are used, and the lack of mutual
recognition of advance directives from other jurisdictions. 1 47
2.8.4 Gaps in the literature
As revealed above, the literature that critiques the Australian legislation is quite
limited. The most significant gap in the commentary is a critique of the statutes in
light of the stated objectives for enacting legislation. The extent to which the need
for legislative reform was considered in the course of parliamentary debates differed
145 See also Stoffell and Lewis, above n 76, 129 where the authors also observe the narrow ambit of the South Australian legislation. 1 46 White and Willmott, Rethinking Life-Sustaining Measures: Questionsfor Queensland, above n 45. 147 Brown, 'The law and practice associated with advance directives in Canada and Australia: similarities, differences and debates ' , above n 78, 59 .
74
across jurisdictions. However, as observed earlier in this chapter, 1 48 one of the
themes that emerged as a driver for reform in this field was the need to enshrine the
common law right of a competent individual to give an advance refusal of treatment.
The assumption that was made that if common law principles underpinned a
legislative regime, the principle of self-determination would also be legislatively
enshrined.
Critique of legislative regimes against common law regulation
The common law and statutory models o f regulation are significantly different. At
common law, an advance directive that refuses life-sustaining medical treatment will
be followed if it is valid and applicable to the medical situation that later arises.
There are many more factors that must be satisfied before an equivalent statutory
directive needs to be followed by medical professionals. The statutes usually have
formality requirements. There are also limitations or restrictions that relate to the
condition of the person giving the advance directive at the time it is completed, or
later when a decision must be made about whether it will be followed. There are also
provisions relating to when a medical professional is not required to follow the
directive and, at least in one jurisdiction, a requirement about the provision of
information prior to the completion. In other words, statutory advance directives are
subject to a greater degree of regulation than their common law counterparts.
This difference in approach raises the question of whether the statutory regime is
more restricted in its operation than the common law. That is, are there advance
directives that would be enforceable at co1mnon law, but not recognised under
statute? If this is the position, is that situation desirable? These issues have not been
explored in the literature.
Critique of legislative regimes against the principle of autonomy
The issue that follows on directly is whether the greater degree of regulation that
exists under legislation promotes individual autonomy.
1 48 See s 2 .6. 1 above.
75
All statutory provisions are inserted for a specific purpose. For example, some of the
formality provisions would have been enacted to ensure that the individual involved
did, in fact, give the directive in question. These provisions, therefore, give the
medical professionals relying on the advance directive some confidence about the
content of the directive, as well as the fact that the directive was given by the person
who now lacks capacity. These provisions therefore are safeguards to ensure that the
directive did represent the wishes of the now incompetent individual. To this extent,
the regulation is consistent with the principles of autonomy. However, there may be
some provisions that cannot be explained on this basis. An obvious example is the
restriction contained in the Queensland legislation that a person must be sufficiently
ill before an advance directive that refuses life-sustaining medical treatment can be
followed. 149 A medical professional is not permitted to follow such an advance
directive if the person does not satisfy one of the categories of illness or disease
specified in the legislation, even if that is the uncontested and clear wish of the
person who now has lost capacity. The purpose of such a limitation could not be the
promotion of the principle of autonomy. Instead, there must be some other
motivating policy reason, perhaps the sanctity of life, which justified such a
restriction.
It is important to examine the provisions of the various statutes to detennine which
provisions are designed to promote the principle of autonomy, and which are not. If
the stated purpose of statutory regulation is to promote the right of an individual to
determine his or her future medical treatment, the legislative restrictions that do not
promote that right are arguably not justifiable. Yet, there is a dearth o f literature that
explores this question.
2. 9 Original and significant contributions to knowledge
This review has identified literature relevant to the common law and statutory
regulation of advance directives. It has also reviewed key literature that has
considered the principle of autonomy as the basis for legal regulation. This review
has also identified gaps in knowledge in this field. This thesis aims to fill a number
1 49 Powers of Attorney Act 1998 (Qld) s 36(2).
76
of those gaps through a comprehensive description and critique of the common law
and statutory regimes. The gaps in the literature that this thesis addresses are
explored below.
2.9. 1 Common law
This thesis exammes the common law on advance directives that exists both in
Australia and England. While there has been some literature that describes the
common law and comments on the approaches taken by the judiciary when matters
are brought before the courts and tribunals, the thesis takes that scholarship
considerably further. It does so in the following three ways.
Identifies and reviews all publicly available decisions
First, the thesis identifies and reviews all of the publicly available decisions
regarding common law advance directives that have refused life-sustaining medical
treatment. Earlier literature has described and analysed one or more of these
decisions, but a comprehensive review has not before been carried out. The second
paper ( 'Do the courts practise what they preach?') undertakes this identification and
review.
Comprehensive legal critique
Secondly, the legal critique that is undertaken is more comprehensive than any other
to date. The existing literature has only sporadic coverage ofthe cases and the legal
issues that are raised by them. In contrast, this thesis considers the legal reasoning
that is used in all of the decisions, and critiques that reasoning. The finding of this
analysis is that there are aspects of judicial or quasi-judicial reasoning or approaches
that are open to challenge. The legal critique of the common law decisions is
undertaken primarily in the second paper ( 'Do the courts practise what they
preach? ') , but also occurs to a more limited extent in the fourth paper ('Refusing
advance refusals ' ) . The following legally significant issues were identified by the
legal critique.
77
(i) Requirement for the maker of an advance directive to be 'sufficiently
informed '
Many commentators have suggested that for an advance directive to be valid, the
maker of the directive must have received sufficient information at the time it is
completed. This thesis explores this proposition in the second paper ( 'Do the courts
practise what they preach? ') , and in the fourth paper ( 'Refusing advance refusals ') ,
and concludes that this position cannot be justified.
(ii) Standard of proof for validity and applicability of advance directive
The standard of proof that must be reached to satisfy a court or tribunal that the
advance directive is, and continues to be, valid, as well as applicable to the
circumstances is critical. Surprising judicial statements have been made about the
standard of proof While there has been limited commentary on this point, this thesis
explores this issue further in both the second and fourth papers ( 'Do the courts
practise what they preach? ' and 'Refusing advance refusals ' respectively) .
(iii) Inappropriate adjudication
Although there are relatively few cases that have considered the validity and
applicability of co1mnon law advance directives, some aspects of how these matters
are adjudicated give cause for concern. Particular issues identified in the thesis are
operational irregularities, and failure to apply correct legal considerations, including
a failure to consider whether an advance statement constituted an advance directive,
and misguided reliance on precedents that are inapplicable to the particular case.
There has been limited commentary in Australia regarding operational irregularity.
However, there has not been consideration of the other aspects of adjudication
referred to . These issues are explored in the second paper ( 'Do the courts practise
what they preach? ') .
Some theoretical critique
Thirdly, the thesis contains a level of theoretical critique. By using autonomy as a
normative framework, the thesis comments on whether, as a result of the above
matters identified through the legal critique, the common law is effective in allowing
competent adults to refuse life-sustaining treatment through the mechanism of an
78
advance directive. The conclusion reached is that the common law, as applied by
judicial and quasi-judicial bodies, does not facilitate a sufficient degree of self
determination by a competent adult in this regard. The thesis relies not only on the
above legal critique for this conclusion. It also questions whether, in some instances,
the facts have been strained by the judges to enable treatment to be given contrary to
the terms of a directive. Also considered is the rhetoric used and approach taken by
courts and tribunals to achieve an outcome of treating the now incompetent adult. As
explored in the thesis, particularly in the second paper ( 'Do the courts practise what
they preach?') , these factors together provide a strong argument that the common
law, as applied by courts and tribunals, favour a sanctity of life rather than autonomy
philosophy or approach. Some commentators have canvassed concerns about the
principle of autonomy being undermined in advance directive cases. This thesis
supports this claim through a detailed legal critique and consideration of relevant
non-legal factors that evidence the priority afforded to the sanctity of life in these
types of cases.
2.9.2 Legislation
The second focus of this body of research is the identification and review of all ofthe
advance directive legislation that exists in Australian States and Territories. As
illustrated in this chapter, there has been relatively little commentary on the
Australian legislation. The commentary that exists is, for the most part piecemeal,
and focuses on relatively limited aspects of regulation. There has also been very
limited examination of the rationale for legislative reform. This thesis makes a
significant and original commentary to the literature in three ways.
Review of all parliamentary debates
Firstly, all relevant parliamentary debates that considered advance directive
legislation were reviewed. It is likely that the cmmnon law on advance directives
applied in Australia prior to the enactment of legislation. It is, therefore, significant
to understand the motive of parliaments in enacting legislation in the same area. It is
important to know whether it was the intention of parliament to simply enshrine or to
alter common law principles. If the former, it is also informative to know why this
was thought to be necessary. The thesis fills a gap in the literature by undertaking a
79
review of parliamentary debates in all relevant jurisdictions to address this issue.
This review is undertaken in the fifth paper ( 'A comparative Australian statutory
analysis ') .
Comprehensive review of all Australian legislation
Secondly, all of the Australian legislation governing advance directives has been
comprehensively reviewed. This was undertaken predominantly in the fifth paper
( 'A comparative Australian statutory analysis ') , but some legislative analysis also
occurred in the third and fourth papers ( 'Eroding autonomy' and 'Refusing advance
refusals ' respectively). This review considered the major aspects of regulation
including validity, when advance directives can be completed, when they can
operate, and when a medical professional is excused from non-compliance. A
comprehensive review of this nature has not before been undertaken.
Theoretical critique
Thirdly, using autonomy as a nonnative framework, the major aspects of all of the
Australian legislation is critiqued. The legislation is critiqued in relation to the
provisions governing validity, when the advance directive can be completed, when
an advance directive can operate, and when an advance directive can be ignored.
This critique occurs predominantly in the fifth paper ('A comparative Australian
statutory analysis ' ) , but also in the third and fourth papers ( 'Eroding autonomy' and
'Refusing advance refusals' respectively) . There has been very little critique of
Australian legislation, and no comprehensive critique of all statutes as against the
principle of autonomy.
2.9.3 Development of criteria for desirable model of regulation
Finally, the thesis considered what provisions a statute should have, and indeed not
have, to give effect to a competent individual ' s right to self-detennination. The fifth
paper ( 'A comparative Australian statutory analysis ' ) argued that there should be two
goals of any legislative regime: to enshrine common law principles on validity and
applicability of advance directives; and to address practical barriers (referred in the
paper as ' legitimate' barriers) that may result in advance directives not being
80
followed. Legislation should only contain provisions that would achieve these goals.
Provisions that are intended to limit the operation of advance directives for other
reasons cannot be justified. The paper concludes that a legislative model based on
the above goals would promote a competent individual ' s autonomy.
This part of the thesis, Part 1 , described the research problem, the objectives and
aims of the research and how the five papers achieved those objectives and aims. It
also contained a review of the relevant literature in the field. Part 2 of thesis follows.
That part contains the five published papers that form the central component of the
thesis.
8 1
PART 2 : PUBLISHED PAPERS
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CHAPTER 3 - LAW, AUTONOMY AND ADVANCE
DIRECTIVES
'LAW AUTONOMY AND ADVANCE DIRE CTIVES'
Lindy Willmott, Ben White and Ben Matthews
(20 10) 1 8 journal of Law and Medicine 3 66
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CHAPTER 4 - ADVANC E D IRECTIVES REFUSING
TREATMENT AS AN EXPRESSION OF AUTONOMY:
DO THE COURTS PRACTISE WHAT THEY PREACH?
'DO THE COURTS PRACTISE WHAT THEY
PREACH?'
Lindy Willmott
(2009) 3 8 (4) Common Law World Review 295
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Advance Directives Refusing Treatment as an Expression
of Autonomy: Do the Courts Practise What They Preach ?
Lindy Willmott*
Abstract: The principle of autonomy is at the heart of the right of a competent individual to make an advance directive that refuses lifesustaining medical treatment, and to have that directive complied with by medical professionals. That right is protected by both the common law and, to an extent, by legislation that has been enacted in the United Kingdom and many jurisdictions in Australia. The courts have a critical role in protecting that autonomy, both in those jurisdictions in which the common law continues to operate and in those jurisdictions which are now governed by statute, and in which judicial determinations will need to be made about legislative provisions. The problem explored in this paper is that while the judiciary espouses the importance of autonomy in its judgments, that rhetoric is frequently not reflected in the decisions that are reached. In the United Kingdom and Australia, there is a relatively small number of decisions that consider the validity and applicability of advance directives that refuse life-sustaining medical treatment. This paper critically evaluates all of the publicly available decisions and concludes that there is cause for concern. In some cases, there has been an unprincipled evolution of common law principles, while in others there has been inappropriate adjudication through operational irregularities or failure to apply correct legal principles. Further, some decisions appear to be based on a strained interpretation of the facts of the case. The apparent reluctance of some members of the judiciary to give effect to advance directives that refuse treatment is also evidenced by the language used in the judgments. While the focus of this paper is on common law decisions, reference will also be made to legislation and the extent to which it has addressed some of the problems identified in this paper.
Keywords: medical law, advance · directives, autonomy, selfdetermination, life-sustaining medical treatment, withholding and withdrawing
* Lindy Willmott, BCom, LLB (Hons) (UQ), LLM (Cantab), Professor, Health Law Research Program, Faculty of Law, Queensland University of Technology; e-mail: [email protected]
Common Law World Review 38 (2009) 295-341
DOI: 10.1350/clwr.2009.38.4.0198
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I. Introduction
At the end of life, competent adults are frequently required to make difficult decisions about medical treatment that they wish to receive or refuse. In some cases, because of an individual's life values and goals, he or she may wish to refuse treatment that many others, including that person's treating team, may wish him or her to undergo. While good medical practice dictates that medical professionals and the patient discuss treatment options and pathways, the decision to accept or refuse treatment offered ultimately rests with the patient. This is so even if the choice is no treatment at all, and that choice results in the patient's death. While perhaps complicated by issues of proof, at common law the p osition is the s ame if a competent adult has made a treatment decision in advance of the medical situation arising, and subsequently loses capacity. That person's previously communicated treatment decision will prevail, even if those close to the individual or the treating medical professional would prefer a different treatment pathway to be chosen.
From a legal perspective, two important principles are relevant when considering a competent adult's refusal of life-sustaining medical treatment, whether that refusal is made contemporaneously or in advance.1 The first principle is that of sanctity of life. In a liberal democracy, the state's interest in preserving the life of its citizens is reflected in legal doctrine. For this reason, an adult's request for lifesustainin g treatment to be withdrawn or withheld will be closely scrutinized. The second principle is autonomy, from which stems a right to determine one's medical treatment. This is regarded as an almost inviolable right in a liberal democracy, and is also a principle that is recognized by the law.2 These two principles do not sit together comfortably in the context of a competent adult's contemporaneous or advance decision to refuse life-sustaining medical treatment. Nevertheless, the legal position is clear. While the principle of sanctity of life is an important one that prevails in many circumstances, it is trumped by the principle of autonomy when the two conflict.3 At common law, a competent patient cannot be forced to receive unwanted treatment in order to sustain life, and a decision to refuse such treatment that is made in advance must be complied with. To a large extent, this also represents the statutory position in those jurisdictions
1 These principles and the relevant legal authority are considered in section II. 2 Note that the right to determine one's own medical treatment is not absolute. For
example, individuals may be detained and treated against their will pursuant to mental health legislation that exists in most jurisdictions.
3 See, for example, Re T (Adult: Refusal of Treatment) [1993] Fam 95 at 112; Airedale NHS Trust v Bland [1993] AC 789 at 864; Re AK (Medical Treatment: Consent) [2001] 1 FLR 129 at 134; HE v A Hospital NHS Trust [2003] 2 FLR 408 at 416; W Health care NHS Trust v H [2005] 1 WLR 834 at 838.
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that have engaged in statutory reform. Legislation recognizes the right of a competent adult to complete an advance directive that refuses life-sustaining medical treatment.4
It is not only the common law and legislation that recognizes a competent adult's right to refuse treatment. There exists an enormous body of literature from the disciplines of philosophy, medical ethics and law which supports the notion of autonomy underpinning our legal framework more broadly, and specifically in the context of refusing treatment. 5
The failure to recognize autonomy would have significant implications for us as a liberal democracy. In the context of decisions to refuse treatment, the supremacy of bodily integrity itself would be at risk. An equally dangerous situation would arise if the courts, while overtly purporting to support the principle of autonomy, made decisions which undermined the spirit of the principle by actively seeking justification for not following a refusal of treatment contained in an advance directive.
Yet, it is this latter hypothesis that has troubled commentators over recent years. The approach taken by the judiciary in end-of-life cases generally, and in decisions involving advance directives that refuse life-sustaining medical treatment in particular, has been the subject of rigorous scrutiny and criticism. Commentators have argued that unjustifiable decisions have been reached because judges apply legal principles from a particular bias. This bias can stem from a judge's particular perception of the meaning of autonomy, or from a personal
4 Statutory reform is considered in section Ill. 5 Relevant here is the work of J.S. Mill, On Liberty and Other Essays (Oxford
University Press: New York, 1991) and of R. Dworkin, Life's Dominion: an argument about abortion and euthanasia (Harper Collins: London, 1993). See also J.F. Childress, 'The Place of Autonomy in Bioethics' (1990) 20(1) The Hastings Center Report 12; S. Ikonomidis and P.A. Singer, 'Autonomy, liberalism and advance care planning' (1999) 25 Journal of Medical Ethics 522; J. Coggon, 'Varied and principled understandings of autonomy in English law: Justifiable inconsistency or blinkered moralism?' (2007) 15 Health Care Analysis 235; S. Michalowski, 'Advance refusals of life-sustaining medical treatment: the relativity of an absolute right' (2005) 68(6) Modern Law Review 958. Note also the criticisms that have been levelled at autonomy as the appropriate principle to underpin the regulation of advance directives: see, for example, R. Dresser, 'Missing Persons: Legal Perceptions of Incompetent Patients' (1994) 46 Rutgers Law Review 609; R. Dresser, 'Dworkin on Dementia: Elegant theory, questionable policy' (1995) 25(6) The Hastings Center Report; R.A. Burt, 'The end of autonomy' (2005) 35 The Hastings Center Report 59 at S9; G. Winzelberg, L. Hanson and J. Tulsky, 'Beyond autonomy: diversifying end-of-life decision-making approaches to serve patients and families' (2005) 53 Journal of American Geriatrics Society 1046; J.S. Taylor, 'Autonomy and informed consent: a much misunderstood relationship' (2004) 38 Journal of Value Inquiry 383; L. Emanuel and E. Emanuel, 'Decisions at the End of Life: Guided by Communities of Patients' (1993) 23(5) The Hastings Center Report 6; A. Maclean, 'Advance directives, future selves and decisionmaking' (2006) 14 Medical Law Review 291.
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bias in favour of life, or from a bias that some lives are worth preserving regardless of expressed wishes.6
The thesis of this paper is consistent with these criticisms, namely that many judges find an advance refusal to be invalid or not applicable to a medical situation because of a moral or emotional reluctance to reach a decision that will result in the death of a vulnerable individual. This paper adds to the debate in the following ways. First, it reviews and undertakes a critical evaluation of all of the publicly available common law cases on advance directives in England and Australia_? It deconstructs the various judgments to distil precisely the techniques and tools that are utilized by the judges in arriving at their decisions-for the most part, not to follow the advance directive. This analysis isolates a range of legal and practical factors that contribute to this outcome, and provides evidence, from the language used in the judgments themselves, of the reluctance of the judiciary to recognize such advance directives. As part of this analysis, the p aper also examines a recent decision of a superior court in Australia, Hunter and New England Area Health Service v A, 8 which signifies a much greater preparedness to respect individual autonomy. In upholding the individual's advance refusal, McDougall J takes an approach which is distinctly at odds with that taken in previous English and Australian decisions. S econdly, the paper considers the legislation that operates in the United Kingdom and in Australia, and the extent to which an individual may refuse life-sustaining medical treatment in advance. The paper also considers the effect that statutory reform has had on the common law, and the extent to which the legislation has addressed the problematic issues that will be identified as arising from the common law.
Until Hunter's case, which may herald a more enlightened judicial approach, there has not been a case in which a court has upheld an advance directive where, at the time of hearing, the adult had lost capacity. The conclusion reached is that, despite mouthing the words of autonomy and self-determination, when called upon to make decisions about advance refusals, the courts have generally been reluctant to hold that the directives should govern treatment. This reluctance is undesirable, not only for the adult whose previously expressed directive has been ignored, but for all of those in our society who wish to
6 See, for example, Coggon, above n. 5, Michalowski, above n. 5 and A. Maclean, 'Advance directives and the rocky waters of anticipatory decision-making' (2008) 16 Medical Law Review 1. There is also some Australian literature that is critical of the judicial approach in end-of-life cases. See, for example, T. Faunce, 'Re Herrington: Aboriginality and the Quality of Human Rights Jurisprudence in Endof-life Decisions by the Australian Judiciary' (2007) 15 Journal of Law and Medicine 201 and J. Hamblin, 'Blood transfusions and the limits of autonomy' (1999) 7 Australian Health Law Bulletin 49.
7 England and Australia were chosen because there have been a reasonable number of decisions involving advance directives, as well as legislative reform in the area.
8 [2009] NSWSC 761.
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plan for medical treatment or non-treatment at the end of life . Such an approach undermines personal autonomy, a principle that underpins our liberal democracy and judicial doctrine.
ll. The Common Law (as Enunciated by the Judiciary)
The common law in England, and more recently Australia, has been clearly articulated. A competent adult can refuse medical treatment even if that treatment is necessary to keep him or her alive.9 Further, a competent adult can complete a directive about the treatment he or she does not wish to receive in the future should that person later lose capacity to decide treatment.10 A medical professional who does not comply with a patient's decision to refuse treatment may be liable to both civil and criminal sanctions.H
It necessarily follows from the above statement of legal principle that, in cases of advance refusals of life-sustaining medical treatment, the principle of autonomy prevails over that of sanctity of life. This
9 In England, see Re B (Adult: Refusal of Medical Treatment) [2002] 2 All ER 449; HE v A Hospital NHS Trust [2003] 2 FLR 408 at 414 where Munby J agrees with the assessment of Professor A. Grubb in 'Competent adult patient: right to refuse lifesustaining treatment' (2002) 10 Medical Law Review 201 at 203 that 'English law could not be clearer' on this point. In Australia, see Brightwater Care Group an c) v Rossiter [2009] WAS C 229 at [26].
10 In England, see Re T (Adult: Refusal of Treatment) [1993] Fam 95 at 103; Airedale NHS Trust v Bland [1993] AC 789 at 864; Re C [1994] 1 All ER 819 at 824; Re AK (Medical Treatment: Consent) [2001] 1 FLR 129 at 134; HE v A Hospital NHS Trust [2003] 2 FLR 408 at 415; W Healthcare NHS Trust v H [2005] 1 WLR 834 at 838. In Australia, see Hunter and New England Area Health Service v A [2009] NSWSC 761 at [40(6)] . This was the first decision of a superior court in Australia about the validity of an advance directive at common law. However, even before this decision, this was generally accepted as representing the Australian law: see, for example, Queensland Law Reform Commission, Assisted and Substituted Decisions: Decision-making by and for people with a decision-making disability, Report No 49 (1996) Vol. 1, 357; second reading speech introducing amendments to the Guardianship and Administration Act 1990 (WA) to provide for statutory advance health directives where it was assumed that common law advance directives were binding, 6 December 2006; although not expressly addressing the point, the Victorian Court of Appeal in Qumsieh v Guardianship and Administration Board & Anor [1998] VSCA 45 seemed to accept that a common law advance directive would be binding in that jurisdiction. See also I. Kerridge, M. Lowe and C. Stewart, Ethics and Law for the Health Professions, 3rd edn (The Federation Press: Sydney, 2009) 253; C. Stewart, 'Advance Directives: Disputes and Dilemmas' in I. Freckelton and K. Petersen (eds), Disputes and Dilemmas in Health Law (The Federation Press: Sydney, 2006) 38; J. Mcllwraith and B.I. Madden, Health Care and the Law, 4th edn (Thomson LBC: Sydney, 2006) 132; J. Devereux, Australian Medical Law, 3rd edn (Cavendish: London, 2007) 905; L. S kene, Law and Medical Practice, 3rd edn (Lexis Nexis Butterworths: Sydney, 2008) [5.8].
11 S ee, for example, Re F [1990] 2 AC 1 at 73; Re T [1992] 4 All ER 649 at 653. For a consideration of the causes of action that could potentially arise for failure to comply with an advance directive, see S. Michalowski, 'Trial and Error at the End of Life-No Harm Done?' (2007) 27(2) Oxford Journal of Legal Studies 257; H. F. Lynch, M. Mathes and N.N. Sawicki, 'Compliance with advance directives: wrongful living and tort law incentives' (2008) 29 Journal of Legal Medicine 133.
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position is reflected in and confirmed by the language used in end-oflife decisions. The supremacy afforded to the principle of autonomy in this context is perhaps most clearly articulated by Lord Gaff in the landmark decision of Airedale NHS Trust v Bland:
First, it is established that the principle of self-determination requires that respect must be given to the wishes of the patient, so that if an adult patient of sound mind refuses, however unreasonably, to consent to treatment or care by which his life would or might be prolonged, the doctors responsible for his care must give effect to his wishes, even though they do not consider it to be in his best interests to do so . . . To this extent, the principle of the sanctity of human life must yield to the principle of self-determination . . . and, for present purposes perhaps more important, the doctor's duty to act in the best interests of his patient must likewise be qualified . . . . Moreover the same principle applies where the patient's refusal to give his consent has been expressed at an earlier date, before he became unconscious or otherwise incapable of communicating it . . . 12
As part of the law's attempt to balance the principles of sanctity of life and autonomy, effect will only be given to an advance directive that is valid and applicable to the circumstances that have arisen. If the directive is not valid, or valid but not applicable to the situation that later arises, the appropriate treatment must be determined in another way. Where there is doubt about validity or applicability, the advance refusal will not be effective. In other words, any doubt is resolved in favour of the preservation of life .13
For the advance directive to be valid, the adult must have had capacity at the time the advance directive was made, and must have been able to communicate the decision about treatment.14 At common law, the meaning of 'capacity' is relatively settled and depends on the
12 [1993] AC 789 at 864. Note that this statement was made in dicta only, as the patient in that case was a young man who was unconscious and had not previously expressed his wishes about future treatment. These comments of Lord Goff were referred to (and implicitly endorsed) in Re AK (Medical Treatment: Consent) [2001] 1 FLR 129 at 133--4; -Re B (Adult: Refusal of Medical Treatment) [2002] 2 All ER 449 at 456; HE v A Hospital NHS Trust [2003] EWHC 1017 (Fam), 416.
13 See, for example, Re T (Adult: Refusal of Treatment) [1993] Fam 95 at 112; HE v A Hospital NHS Trust [2003] 2 FLR 408 at 421. For commentary on the appropriateness of using 'bias in favour of life' in determining the validity or applicability of an advance directive, see Michalowski, above n. 5.
14 R (Burke) v General Medical Council [2005] QB 424 at 440 (although note that, in overturning the decision, the Court of Appeal suggested caution in relying on aspects of Munby J's judgment in future cases: R (Burke) v General Medical Council [2006] QB 273). Kennedy and Grubb suggest that there is a further requirement for validity: that the adult have sufficient information on which to found a decision to refuse treatment: I. Kennedy and A. Grubb, Medical Law, 3rd edn (Butterworths: London, 2000) 2037-8. This view has also received some judicial support. Compare views expressed in L. Willmott, B. White and M. Howard, 'Refusing Advance Refusals: Advance Directives and Life-Sustaining
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ability of an adult to function rationally.15 Any undue influence or other vitiating factor that was exerted on the adult at the time of signing may also affect the validity of the advance directive. 16 There are no formality requirements for the advance directive to be valid, 17 and it can be revoked by the adult at any time.18
Even if an advance directive is valid, before it will govern treatment it must also be applicable to the adult's circumstances. To be applicable, the issue is whether the adult intended the directive to govern the medical situation that later arose. This will require a consideration of the medical condition that later confronts the adult and the directive given previously, but also of whether the adult subsequently evinced an intention no longer to be bound by the directive.19
Ill. Statutory Reform
The law governing advance directives has undergone significant statutory reform in both the United Kingdom and Australia. While legislative reform is relatively recent in the United Kingdom, statutory reform commenced in Australia in the early 1980s and legislation has now been enacted in six of Australia's eight jurisdictions.
The Mental Capacity Act 2005 (UK) was a long time in the making. The Law Commission examined the broader body of regulation concerning decision-making by and on behalf of individuals who lacked the capacity to make their own decisions. The Commission published a discussion paper20 and four consultation papers on a range of issues, 21 followed by a final report in 1995 entitled 'Mental Incapacity'. 22
Medical Tre atment' (2006) 30 Melbourne University Law Review 211 at 220-1. The proposition that the validity of an advance directive will depend on whether the directive is based on sufficient information is explored further in section V.i below.
15 See, for example, Re C (Adult: Refusal of Medical Treatment) [1994] 1 All ER 819; Re MB (Medical Treatment) [1997] 2 FLR 426; Re B (Adult: Refusal of Medical Treatment) [2002] 2 All ER 449; R (Burke) v General Medical Council [2005] QB 424.
16 For a consideration of when influence will be regarded as 'undue' and therefore vitiate validity, see comments of Staughton U in Re T [1992] 4 All ER 649 at 669.
17 HE v A Hospital NHS Trust [2003] 2 FLR 408 at 417. 18 Ibid. at 418. 19 For a detailed consideration of circumstances in which a valid advance directive is
likely to be held not applicable at common law, see Willmott, White and Howard, above n. 14.
20 Law Commission, Decision-Making and Incapacity: A Discussion Document (1989). 21 Law Commission, Mentally Incapacitated Adults and Decision-Making: An
Overview, Consultation Paper No 119 (1991); Law Commission, Mentally Incapacitated Adults and Decision-Making: A New Jurisdiction, Consultation Paper No 128 ( 1993); Law Commission, Mentally Incapacitated Adults and DecisionMaking: Medical Treatment and Research, Consultation Paper No 129 (1993); Law C ommission, Mentally Incapacitated and Other Vulnerable Adults: Public Law Protection, Consultation Paper No 130 (1993).
22 Law Commission, Mental Incapacity, Report No 231 (1995).
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Although the United Kingdom legislation that was ultimately enacted was largely based on the recommendations of the Law Commission, there was extensive review of, and consultation on, those recommendations carried out by the government. As part of this review, the Lord Chancellor's Department produced a Green Paper in 1997 entitled 'Who Decides? Making Decisions on Behalf of Mentally Incapacitated Adults'23 and a White Paper in 1999 entitled 'Making Decisions: The Government's Proposals for Making Decisions on Behalf of Mentally Incapacitated Adults'.24
Recommendations regarding advance directives about medical treatment had an interesting evolution. The final report of the Law Commission recommended that advance decisions refusing medical treatment should be enforceable and that this right should be statutorily enshrined. 25 Despite this recommendation, and despite seeking the views of the public about the enactment of legislation in its Green Paper, the government expressed the view in its White Paper that advance directives should continue to be governed by the common law only.26 Notwithstanding the government's position as expressed in the White Paper, the Mental Capacity Act 2005 (UK) ultimately made provision for advance directives in sections 24-6.
Legislation has evolved in the various Australian jurisdictions on an ad hoc b asis, sometimes, but not always, following either a law reform commission or governmental review. Reform commenced in South Australia with the enactment of legislation in 1983.27 This statute was subsequently repealed and replaced by the Consent to Medical Treatment and Palliative Care Act 1995 (SA).28 The Northern Territory then enacted the Natural Death Act 1988, which was largely modelled on the earlier South Australian legislation. Victoria was next to pass legislation, the Medical Treatment Act 1988, following a review of the law by the S ocial Development Committee which was established by the Victorian Government to inquire into a number of issues related to
23 Lord Chancellor's Department, Who Decides? Making Decisions on Behalf of Mentally Incapacitated Adults, Cm 3803 {1997).
24 Lord Chancellor's Department, Making Decisions: The Government's Proposals for Making Decisions on Behalf of Mentally Incapacitated Adults, Cm 4465 (1999).
25 Law C ommission, Mental Incapacity, Report No 231 {1995), recommendations 1 1.25-33.
26 Lord Chancellor's Department, Making Decisions: The Government's Proposals for Making Decisions on Behalf of Mentally Incapacitated Adults, Cm 4465 {1999) 3-4.
27 Natural Death Act 1983 {SA). 28 More recently, the South Australian Government established an Advance
Directives Review Committee, and the Attorney-General has recently released the reports of the Committee: First Report of the Review of South Australia's Advance Directives-Proposed Changes to Law and Policy and S econd Report of the Review of S outh Australia's Advance Directives-Stage 2 Proposals for Implementation and Communication Strategies: http://www.agd.sa.gov.au/news/ index.php#advancedirectives {last accessed 14 October 2009).
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treatment of dyjng patients.29 The Australian Capital Territory government enacted legislation in 199430 which was replaced by the Medical Treatment (Health Directions) Act 2006 (ACT) . Queensland enacted the Powers of Attorney Act 1998 following a comprehensive review of the law on substitute decision-making by the Queensland Law Reform Commission.31 Western Australia was the most recent jurisdiction to enact legislation governing advance directives. The Acts Amendment (Consent to Medical Treatment) Act 2006 was enacted to amend the Western Australian guardianship legislation by inserting a part on advance directives.32 Similar to the reform process in the United Kingdom, the legislation followed a review by the Western Australian Law Reform Commission33 and subsequent reviews34 and consultation by the Western Australian Government.
These seven statutes (one in the United Kingdom and six in Australia) diTfer significantly in many respects, including whether directions can be made about receiving and refusing treatment, or about refusing treatment only, or about refusing life-sustaining treatment only. However, they all share one important feature: a competent person is entitled, at least in some circumstances, to make an advance directive that refuses life-sustaining medical treatment. Further, it is generally the case that an advance directive that complies with the statutory requirements must be followed by medical professionals who are treating the now incompetent person. All of the statutes therefore, at least at some level, recognize and promote the principle of autonomy.35
While it is beyond the scope of this paper to comprehensively review the legislation, some of the major features of the statutory regimes should be mentioned. There are many similarities in how the statutes regulate advance directives refusing life-sustaining medical treatment, including the following:
29 The final report of the Committee, 'Inquiring into Options for Dying with Dignity', was delivered in April 1987.
30 Medical Treatment Act 1994 (ACT). 31 Queensland, Assisted and Substituted Decisions, Report No 49 (1996). 32 Guardianship and Administration Act 1990 Part 9B. Note that, at the time of
writing, Part 9B had not yet commenced operation. 33 Law Reform Commission of Western Australia, Medical Treatment for the Dying,
Project No 84, Report (1991) and Law Reform Commission of Western Australia, Medical Treatment for the Dying, Project No 84, Discussion Paper (1988).
34 Medical Treatment for the Dying, Discussion Paper issued by the AttorneyGeneral and Minister for Health (2005).
35 Note, however, that some commentators have queried the extent to which legislation has been effective to promote an individual's autonomy in the context of refusing treatment. In England, see Maclean, above n. 6; Michalowski, above n. 5; C. Johnston, 'Does the statutory regulation of advance decision-making provide adequate respect for patient autonomy?' (2005) 26 Liverpool Law Review 189; S. Halliday, 'Advance decisions and the Mental Capacity Act' (2009) 18(11) British Journal of Nursing 697. In Australia, see Willmott, White and Ho ward, above n. 14, and L. Willmott, 'Advance Directives to Withhold Life-Sustaining Medical Treatment: Eroding autonomy through statutory reform' (2007) 10 Flinders J oumal of Law Reform 287.
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• Most statutes contain a requirement that the advance directive be in writing.36 Many statutes require the directive to be in a prescribed form, 37 and all of the statutes that require it to be in writing also have witnessing requirements.38
• All of the statutes provide, either expressly or by necessary im· plication, that an advance directive can only operate once the person has lost competence to make decisions.39
• All of the statutes provide, again either expressly or by necessary implication, that an advance directive will not operate if the person has changed his or her mind about the directive, or that circumstances have changed so that the person would no longer have intended the directive to govern treatment.40
There are also some significant differences in the legislation, the major ones being:
• S ome statutes provide that a directive refusing life-sustaining treatment can only operate if the person is sufficiently sick, or if the disease has reached a certain stage.41
36 Mental Capacity Act 2005 (UK), s. 25(6)(a); Consent to Medical Treatment and Palliative Care Act 1995 (SA), s. 7(2); Guardianship and Administration Act 1990 (WA), s. 110Q(1); Medical Treatment Act 1988 (Vie), s. 5(2); Natural Death Act 1989 (NT), s. 4(1); Powers of Attorney Act 1998 (Qld), s. 44(2). Compare the Australian Capital Territory where the directive may be oral or in writing: Medical Treatment (Health Directions) Act 2006 (ACT), s. 7(2).
37 Mental Capacity Act 2005 (UK), s. 25(6)(a); Consent to Medical Treatment and Palliative Care Act 1995 (SA), s. 7(2); Guardianship and Administration Act 1990 (WA), s . 110Q(1); Medical Treatment Act 1988 (Vie), s. 5(2); Natural Death Act 1989 (NT), s. 4(1). In the Australian Capital Territory, if the directive is in writing, it must be in the prescribed form: Medical Treatment (Health Directions) Act 2006 (ACT), ss 7(2) and 8. Compare Queensland where compliance with the prescribed form is optional: Powers of Attorney Act 1998 (Qld), s. 44(2).
38 Mental Capacity Act 2005 (UK), s. 25(6)(c) and (d); Consent to Medical Treatment and Palliative Care Act 1995 (SA), s. 7(2); Guardianship and Administration Act 1990 (WA), s. 1 10Q(1); Medical Treatment Act 1988 (Vie), s. 5(1); Medical Treatment (Health Directions) Act 2006 (ACT), s. 9; Natural Death Act 1989 (NT), s. 4(2); Powers of Attorney Act 1998 (Qld), s. 44(3).
39 Mental Capacity Act 2005 (UK), ss 24(1)(b) and 25(3); Consent to Medical Treatment and Palliative Care Act 1995 (SA), s. 7(1)(b); Guardianship and Administration Act 1990 (WA), s. 1 10S(1)(a); Guardianship and Administration Act 2000 (Qld), s. 66.
40 Mental Capacity Act 2005 (UK), s. 25(2); Consent to Medical Treatment and Palliative Care Act 1995 (SA), s. 7(3)(b); Guardianship and Administration Act 1990 (WA), s. 1 10S(3) and (6); Medical Treatment Act 1988 (Vie), s. 7(1) and (3); Medical Treatment (Health Directions) Act 2006 (ACT), ss 10(1) and 12; Natural Death Act 1989 (NT), s. 4(3); Powers of Attorney Act 1998 (Qld), s. 103.
41 In South Australia, a person must be in the terminal phase of a terminal illness before the advance directive will operate: Consent to Medical Treatment and Palliative Care Act 1995 (SA), s. 7(1)(a). In the Northern Territory, a person must be suffering from a terminal illness: Natural Death Act 1989 (NT), s. 4(1). In Queensland, the person must fall within one of the following categories before the advance directive refusing treatment can operate: the person has a terminal illness or condition that is incurable or irreversible and as a result of which, in the opinion of a doctor treating the person and another doctor, the person may reasonably be expected to die within one year; or the person is in a persistent vegetative state; or the person is permanently unconscious; or the person has an
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• One statute allows only a person who is suffering from a particular condition to make a directive refusing treatment.42 The same jurisdiction also makes the provision of information about the person's condition a prerequisite to the validity of the directive. 43
Another important area of differentiation is the role played by the common law, following statutory enactment. The legislation in Western Australia and Queensland expressly preserves the common law.44 In those jurisdictions, it should therefore be the case that the common law on advance directives would continue to operate alongside the statutory regime.45 In Victoria, the Australian Capital Territory and the Northern Territory, while not expressly preserving the common law, the statute provides that other rights to refuse treatment are not affected by the legislation.46 In these jurisdictions too, the common law would generally continue to operate alongside the statutory regimes. In the United Kingdom and South Australia, the legislation is silent on the continued operation of the common law. The legislation in South Australia is narrow in focus, dealing only with refusal of medical treatment when someone is in the terminal phase of a terminal illness or in a p ersistent vegetative state. As such, it does not purport to cover the range of situations in which a person could give an advance directive at common law. It is therefore likely that the common law would continue to operateY
The position in the United Kingdom is different. Sections 24--6 of the Mental Capacity Act 2005, unlike the provisions of the South Australian statute, are comprehensive in coverage as they purport to regulate all kinds of advance refusals of treatment. While the legislation does not expressly overtake the common law, it is clear that an advance refusal of life-sustaining medical treatment can only operate
illness or injury of such severity that there is no reasonable prospect that the person will recover to the extent that the person's life can be sustained without the continued application of life-sustaining measures: Powers of Attorney Act 1 998 (Qld), s. 36(2)(a).
42 Medical Treatment Act 1988 (Vie), s. 5(1)(a). 43 Medical Treatment Act 1 988 (Vie), s . 5(1)(c). 44 Guardianship and Administration Act 1990 (WA), s. 1 1 0ZB and Powers of
Attorney Act 1 998 (Qld), s. 39 respectively. 45 Note, however, that the provision may not have been effective in Queensland to
preserve the common law. Despite s . 39 of the Powers of Attorney Act 1998 (Qld) which purports to preserve the common law, it is likely that, due to a drafting error when enacting Queensland's guardianship regime (comprised of the Powers of Attorney Act 1 998 (Qld) and the Guardianship and Administration Act 2000 (Qld)), the common law regime no longer applies in Queensland: see B. White and L. Willmott, 'Will you do as I ask? Compliance with instructions about health care in Queensland' (2004) 4 Queensland University of Technology Law and Justice Journal 77.
46 Medical Treatment Act 1988 (Vie), s . 4; Medical Treatment (Health Directions) Act 2006 (ACT), s. 6(1); Natural Death Act 1989 (NT), s. 5(1).
47 This view is shared by legal commentators. See, for example, C. Stewart, 'The Australian experience of advance directives and possible future directions' (2005) 24 Australasian Journal on Ageing 525.
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if it complies with the formality requirements. This leaves no further room for the operation of informal advance directives. This position is also evident from the transitional provisions. In relation to decisions that refuse life-sustaining treatment, the transitional provisions indicate that common law advance directives entered into before the commencement of the legislation on 1 October 2007 will only operate if they satisfy the provisions of the transitional instrument.48 It follows that common law directives that do not comply will not be binding. The implication is that the statutory scheme has effectively overtaken the common law in relation to advance directives that refuse lifesustaining medical treatment.
Despite the legislative reform described above, it is submitted that the common law will continue to play a significant role in relation to advance refusals of life-sustaining treatment in all jurisdictions. In those jurisdictions that have both statutory and common law regimes, an individual may still make a binding common law directive and there is no obligation for that directive to comply with legislative requirements. Further, an unsuccessful attempt to complete a statutory advance directive may still be effective as a common law directive.
It is likely that the common law and approaches taken by the judiciary in developing common law principles will also continue to play a role in jurisdictions, such as the United Kingdom, where the common law has become embedded in statute. First, the common law has developed a body of jurisprudence which is likely to be influential when interpreting the statute.49 Further, the interpretation of some words and phrases that are used in the legislation may be informed by relevant case law and commentary on the common law position. Secondly, the approaches taken by judges in the common law cases will be relevant. Should doubt arise about the existence, validity or applicability of a statutory advance directive, the matter will be determined by the newly established Court of Protection. 50 Members of the court, which is headed by a former President of the Family Division of the High Court, may well be influenced by, or indeed agree with, the attitudes of and approaches taken previously by the High Court (and the Court of Appeal) when considering the validity and applicability of advance directives at common law. As with most pieces of complex legislation, there will undoubtedly be many provisions in the Mental Capacity Act 2005 that will require judicial interpretation. Some areas of ambiguity in relation to advance refusals of medical treatment have
48 Statutory Instrument 2007/1898, para. 5. 49 P. Bartlett, Blackstone's Guide to the Mental Capacity Act, 2nd edn (Oxford
University Press: Oxford, 2008) 26 at 41. 50 Mental Capacity Act 2005 (UK), s. 26(4).
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already been identified.51 Judicial attitudes to date suggest an unwillingness or reluctance to uphold common law directives that refuse treatment. Under the statutory regime, the willingness or otherwise of a judge to allow the autonomous choice of an individual to prevail will continue to b e critical.
Statutory provisions from the United Kingdom and Australian statutes will be considered below where they assist in informing a consideration of the common law.
IV. The Common Law (as Applied by the Judiciary)-An Overview
There have been only a handful of cases in which courts have been c alled upon to decide whether advance directives that refuse lifesustaining treatment should be followed by medical professionals. In England and Australia, there have been eight such decisions over the p ast two decades, with six being decided since 2000:
• Re C (Adult: Refusal of Medical Treatment)52-advance directive followed (High Court, England)
• Re AK (Medical Treatment: Consent)53-advance directive followed (High Court, England)
• HE v A Hospital NHS Trus&4-advance directive not followed (High C ourt, England)
• W Healthcare NHS Trust v If'5-advance directive not followed (Court of Appeal, England)
• NHS Trust v T (Adult Patient: Refusal of Medical Treatment)56-advance directive not followed (High Court, England)
• Qumsieh's case57-advance directive not followed (Guardianship and Administration Board, Victoria, Australia)58
• State of Qld v Ast11159-advance directive not followed (Supreme Court of Queensland, Australia)
51 See, for example, Maclean, above n. 6 who gives an example of the scope for interpretation. Maclean refers to section 24, which allows a person to refuse 'specified treatment'. A narrow reading of that provision may mean that the term does not extend to the refusal of life-sustaining medical treatment generally. This ambiguity gives a court the ability to hold that a general advance refusal falls outside the statutory scheme.
52 [1994] 1 All ER 819. 53 [2001] 1 FLR 129. 54 [2003] 2 FLR 408. 55 [2005] 1 WLR 834. 56 (2005] 1 All ER 387. 57 Unreported decision, Guardianship and Administration Board, L Pilgrim, 24
February 1998. 58 This matter went on appeal, although the decision of the board was not reviewed:
see further Appendix. 59 Unreported decision, Supreme Court of Queensland, Muir J, 18 January 2006.
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• Hunter and New England Area Health Service v A60-advance directive followed (Supreme Court of New South Wales, Australia)
It is interesting to speculate as to why so few cases have resulted in litigation, particularly given the likelihood that common law advance directives would not be an uncommon feature of medical practice. It is perhaps the case that, generally speaking, advance directives are complied with by medical professionals so there is no dispute that requires adjudication. It is also possible that many individuals who are concerned about non-compliance with an advance directive are unwilling for the dispute to be resolved through an adversarial judicial process. The narrow timeframe in which many such decisions must be made may also be a factor in the small number of cases that have been litigated.
An interesting feature of the decided cases is that they all involve an advance directive being given with a particular medical context in mind. In four of the cases, the individuals were either Jehovah's Witnesses or had adopted some of the beliefs of that faith. The advance directives in these cases had been given for the specific reason of refusing blood products or other surgical intervention. Two other cases involved a 19-year-old man and a 59-year-old woman who were suffering from motor neurone disease and multiple sclerosis respectively. Their advance directives were given with their diseases in mind. In the remaining two cases, the individuals were a 68-year-old man and a 37-year-old woman who suffered from mental illnesses, paranoid schizophrenia and a borderline personality disorder respectively. The man needed surgery because of a medical condition and the woman had a long history of self-harm through blood-letting, and no longer wanted to receive blood transfusions to keep her alive following such incidents. In other words, in none of these cases had the adult made an advance directive in the abstract, without a particular medical situation being contemplated.
Given this context, namely the relative certainty of the medical situation or the desired outcome, it might be predicted that the advance directives would be followed, and the treatment not provided to the individual. However, this has not been the trend in the eight decisions, where the individual's advance directive was followed in only three cases.61
These eight cases are examined in the next section. While some of the decisions handed down are supportable, it is submitted that there are also some troubling aspects of the decision-making process that have been employed by the relevant courts. The following analysis casts doubt on whether the principle of self-determination in reality
60 [2009] NSWSC 761. 61 See Appendix for a summary of each case and the court's determination.
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prevails over the principle of sanctity of life. The decided cases suggest that the courts are loath to respect an advance directive that refuses life-sustaining treatment where following the directive will result in the death of an individual, even where, on an objective assessment, the directive is valid and applicable to the circumstances. The courts seem to be overly influenced by or concerned about the 'bias in favour of life', which results in decisions being made that are not supportable on an objective assessment of the facts.62 The undue 'bias in favour of life' permeates many aspects of the courts' deliberations and judgments even where there is no evidence of doubt. The analysis that follows provides evidence of this bias in favour of life which has, in some cases, resulted in decisions that are difficult to j ustify. As explored in the next section, there are three legally significant factors that have contributed to an outcome (of not following an advance directive) that is not entirely defensible:
• An unprincipled evolution of common law principles; • Inappropriate adjudication by judicial or quasi-judicial bodies;
and • Strained interpretation of facts by judicial or quasi-judicial
bodies.
In addition, there is a fourth factor which, although not directly contributing to a particular outcome, is evidence of, and provides some insight into, the reluctance of some judges to uphold an advance directive that refuses life-sustaining medical treatment.
V. Unprincipled Evolution of Common Law Principles
The only requirement for an advance directive to be valid is that the adult possessed the requisite capacity at the time of completion, could communicate the treatment decision, and there were no vitiating factors such as undue influence or duress present at the time of its completion. 53 Nevertheless, some of the cases signal an unprincipled evolution of common law principles which effectively place more legal obstacles in the way of medical professionals relying on an individual's previously expressed wish to refuse treatment. These developments are difficult to justify on the basis of established legal principle.
i. Requirement that the Advance Directive be Based on Sufficient Information
In addition to the requirements of capacity, the ability to communicate and the absence of vitiating factors, statements in some of the cases
62 Compare Maclean, above n. 6, where he argues that the judiciary only selectively uphold advance directives, choosing to uphold only those that they regard as being 'reasonable'. See also Michalowski, above n. 5 .
63 See section I I and nn. 14 and 16 above.
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suggest that an advance directive will only be valid if it is based on sufficient knowledge or information. The suggestion is that the adult must be informed about treatment options before giving the directive, or at least has made the advance directive with knowledge of his or her illness and its likely progress. Two of the common law cases concerning advance directives support this view. 64
In Re AK (Medical Treatment: Consent),65 AK, who was suffering from motor neurone disease, gave a direction that he wanted artificial ventilation stopped two weeks after he could no longer communicate. While finding that the directive was valid, Hughes J made a number of observations about the care that a court must take in coming to such a conclusion:
Care must be taken to investigate with what knowledge the expression of wishes was made. All the circumstances in which the expression of wishes was given will of course have to be investigated. In the present case the expressions of AK's decision are recent and are made not on any hypothetical basis but in the fullest possible knowledge of impending reality. I am satisfied that they genuinely represent his considered wishes and should be treated as such [emphasis added].66
The implication is that an advance directive must be made with at least some knowledge, though the extent of knowledge is not elaborated upon by his Honour.
The law, as articulated by Hughes J, was specifically endorsed by Munby J in HE v A Hospital NHS Trust67 in coming to his decision that a formal advance directive previously completed by a 24-year-old woman could no longer be regarded as operative. 58
A different approach was taken recently by the New South Wales Supreme Court in Hunter and New England Area Health Service v A,69
64 This view is also advanced by some commentators, purportedly relying on comments of Donaldson MR in Re T (Adult: Refusal of Treatment) [1993] Fam 95 at 1 15: see Kennedy and Grubb, above n. 14 at 2037 and Michalowski, above n. 5 at 958. Although Donaldson MR referred to the need to advise a patient in broad terms of the nature and effect of the procedure before obtaining consent or refusal, he rejected the notion that 'informed refusal' had become part of English common law, and stopped short of suggesting that a level of information was required for an advance refusal to be valid. As such, this case is not considered further in this section of the paper.
65 [2001] FLR 129. 66 Ibid. 134. 67 [2003] 2 FLR 408 at [32]. 68 Note that similar suggestions were made by the Michigan Court of Appeals in the
United States decision of Werth v Taylor 475 NW 2d 426 (1991). Despite the patient, a Jehovah's Witness, completing a number of 'Refusal to Permit Blood Transfusion' forms, the medical professional gave the patient a blood transfusion. In finding that the prior refusal did not bind the doctor, the court commented that 'her refusals were . . . not contemporaneous or informed': 475 NW 2d 426 (1991), [150]. The court continued that '[w]ithout contemporaneous refusal of treatment by a fully informed, competent adult patient, no action lies for battery' (emphasis added): 475 NW 2d 426 (1991), [150].
69 [2009] NSWSC 761.
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a case involving a Jehovah's Witness who had completed a document refusing dialysis. While not citing any authority in support, McDougall J referred to the proposition that failure to provide adequate information could operate to vitiate a refusal of treatment.7° His Honour, however, rejected this notion, and commented as follows:
I do not accept the proposition that, in general, a competent adult's clearly expressed advance refusal of specified medical procedures or treatment should be held to be ineffective simply because, at the time of statement of the refusal, the person was not given adequate information as to the benefits of the procedure or treatment (should the circumstances making its administration desirable arise) and the dangers consequent upon refusal. As I have said, a valid refusal may be based upon religious, social or moral grounds, or indeed on no apparent rational grounds; and is entitled to respect . . . regardless.71
It is submitted that this latter approach is more consistent with both authority and the reality of life. It is contrary to established common law principles to impose an additional requirement, over and above capacity, the ability to communicate and the absence of vitiating factors, that an adult must be informed or have knowledge about the progress of his or her illness or about treatment options for his or her advance directive to be valid. The imposition of such a requirement is inconsistent with the law regarding the ability of a competent adult to contemporaneously refuse a life-sustaining measure. It is now settled law that:
Prima facie every adult has the right and capacity to decide whether or not he will accept medical treatment, even if a refusal may risk permanent injury to his health or even lead to premature death. Furthermore, it matters not whether the reasons for the refusal were rational or irrational, unknown or even non-existent.72
Consistent judicial pronouncements have since been made on many occasions.73 If the law accepts that a competent adult may refuse lifesustaining medical treatment even if his or her reasons for doing so are 'irrational, unknown or even non-existent', it must follow that the decision can be made in the absence of knowledge or information that would inform the decision. The suggestion that the reasons for the decision may b e 'non-existent' implies that the decision could be
70 Ibid. [27]. 71 Ibid. [28] . 72 Re T (Adult: Refusal of Treatment) [1993] Fam 115 at 664. 73 See, for example, Airedale NHS Trust v Bland [1993] AC 789 at 864; Re MB
(Medical Treatfient) [1997] 2 FLR 426 at 432; Re B (Adult: Refusal of Medical Treatment) [2002] 2 All ER 449 at 455-6; HE v A Hospital NHS Trust [2003] 2 FLR 408 at 414.
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made without good cause, or without all or any of the relevant information. 74
That a competent person may refuse treatment without receiving all relevant information also reflects the reality of life. A person may have a life-threatening disease or illness, but may choose not to seek medical advice or, if sought, to refuse medical treatment that is offered. The state does not and cannot intervene in such circumstances to compel medical treatment. Provided that the adult has capacity, the decision not to seek medical treatment, or to refuse medical treatment that is offered, is clearly a valid decision. This is the case whether or not the decision not to seek medical advice, or to refuse treatment, is based on full or any knowledge about the illness or treatment options.
If this is correct, as it must be, then the same must be the case for an advance refusal. There is no principled reason for suggesting that an adult must have a greater knowledge of relevant facts about, for example, the illness or treatment options, just because he or she seeks to refuse treatment in advance of the medical situation arising. If a court disregards an individual's advance directive because it is based on insufficient knowledge or information, the court will effectively be compelling the individual to receive medical treatment, an outcome that is demonstrably unacceptable when considered in the context of a contemporaneous refusal. It should be equally unacceptable for an advance refusal.75
It is certainly appropriate to investigate the circumstances in which the expression of wishes was given. For example, a court must be satisfied that the directive was given in the context of deciding his or her future treatment, and was not an abstract thought about medical treatment in general. However, for the reasons just explained, it cannot be the case that the adult must possess a greater degree of knowledge when completing the advance directive for it to be valid. Such an obligation is illogical, inconsistent with authority and represents an unjustifiable extension of (or departure from) common law principles .
74 Compare the contrary suggestion by Martin CJ in the recent Western Australian decision of Brightwater Care Group anc) v Rossiter [2009] WASC 229, a case involving a request by a competent adult, a quadriplegic, to have his artificial hydration and nutrition tube withdrawn. Martin CJ suggested that the common law right to determine and direct the extent of treatment is dependent on whether he has been 'provided with full information with respect to the consequences of any decision he might make': [2009] WASC 229, [49].
75 For support for the proposition that an advance directive will be valid in the absence of knowledge or information about the individual's condition or treatment options, see Willmott, White and Howard, above n. 14 at 220-2. This view is also consistent with the views expressed by J. Munby QC, as he then was, in 'Rhetoric and reality: The limitations of patient self-determination in contemporary English law' (1998) 14 Journal of Contemporary Health Law and Policy 315 at 316-17.
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(a) Effect of Statutory Reform It is interesting to observe that a requirement to receive information about the condition and treatment options has not, as a general proposition, been imposed by legislation as a prerequisite for an advance directive that refuses life-sustaining medical treatment. In the United Kingdom, while a person is encouraged to discuss an advance directive with his or her medical professional/6 failure to do so does not invalidate the advance directive. The position is different in Victoria where a medical professional must certify that the person has been informed about his or her condition to an extent which is reasonably sufficient to enable him or her to make a decision about refusing treatment.77
ii. Issues of Proof
As outlined earlier, a competent adult can refuse life-sustaining medical treatment. If a person lacks capacity or his or her decision is overborne by the influence of another, the refusal of treatment will not be legally effective.78 However, an important point is that the law presumes that a person has capacity to make decisions about their health care.79 This presumption applies in relation to all kinds of health care, even if the decision is to refuse medical treatment that is needed to sustain a person's life.80 If a person's capacity to refuse treatment is disputed, the burden of proving that this is the case will therefore rest with the person alleging a lack of capacity.81 Similarly, a person who is alleging that the decision to refuse treatment is made as a result of undue influence exercised by another party will need to prove this to b e the case.
The same issues are relevant for an advance refusal. The advance directive must be valid at the time of its execution. To be a valid advance refusal, the adult must have capacity and the directive must be made free of undue influence.82 The same presumption as above
76 Mental Capacity Act 2005, Code of Practice, [9.14] and [9.27]. 77 Medical 'Treatment Act 1988 (Vie), s. 5(1)(c). Compare the legislation enacted in
Western Australia, where a person is 'encouraged' to obtain medical advice prior to completing an advance directive, but failure to seek or receive that advice does not make the advance directive invalid: Guardianship and Administration Act 1 990 (WA), ss 1 10Q(1)(b) and (2) and 110QA.
78 See, for example, Re T (Adult: Refusal of Treatment) [1993] Fam 95 at 1 16. 79 Re T (Adult: Refusal of Treatment) [1993] Fam 95 at 112; Re C [1994] 1 All ER 819 at
823-4; Re MB (Medical Treatment) [1997] 2 FLR 426 at 436; Re B (Adult: Refusal of Medical Treatment) [2002] 2 All ER 449 at 457; HE v A Hospital NHS Trust [2003] 2 FLR 408 at 415; NHS Trust v T (Adult Patient: Refusal of Medical Treatment) [2005] 1 All ER 387 at 404-5.
80 Note, however, that the degree of capacity required to make a decision with grave consequences is higher than for other kinds of decisions: see, for example, Re T (Adult: Refusal of Treatment) [1993] Fam 95 at 1 13; Re MB (Medical Treatment) [1997] 2 FLR 426 at 437; Re B (Adult: Refusal of Medical Treatment) [2002] 2 All ER 449 at 458.
81 HE v A Hospital NHS Trust [2003] 2 FLR 408 at 415. 82 For the purpose of this examination, it will be assumed that the adult had the
ability to communicate decisions, another prerequisite for validity.
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applies in relation to capacity: the law presumes that the adult had capacity to make the advance directive and, if anyone disputes that capacity, the burden of proof will rest on the person making the allegation.83 The same principle would logically apply if a person is alleging that the advance directive was made as a result of undue influence.84 However, there are additional considerations that are relevant in determining whether a medical professional should, at some later time, rely on an advance directive. First, because of circumstances that have arisen since its completion, the medical professional may legitimately query whether the directive remains valid. Secondly, the medical professional must be satisfied that the advance directive is applicable to the medical situation that has arisen.
A concerning feature of the case law on advance directives is that, at least in England, an unprincipled approach has evolved to issues of proof. The problematic authority is the following passage from Munby J in HE v A Hospital NHS Trust:85
[23] Burden of proof: in my judgment, although the burden of proof on the issue of capacity is on those who seek to dispute it, the burden of proof is otherwise on those who seek to establish the existence and continuing validity and applicability of an advance directive. So if there is doubt that doubt falls to be resolved in favour of the preservation of life. [24] Standard of proof: clear and convincing proof is required.
Issues of burden and standard of proof will only be relevant once a matter is before a court. If the matter involves an advance directive, the court must determine whether the advance directive was valid at the time of completion, continued to be in existence and is applicable in the medical situation that has arisen. This determination is made on the evidence before the court. The problem is Munby J's assertion that the person who is suggesting that the advance directive should operate has the onus of proving this to be the case. This assertion is problematic at both legal and practical levels.
(a) Legal Concerns First, the assertion that the person 'seeking to establish the existence and continuing validity and applicability of an advance directive' has the burden of proof must be open to question. A court will not uphold an advance directive unless there is evidence that it was valid at the
83 HE v A Hospital NHS Trust [2003) 2 FLR 408 at 415. 84 While none of the cases on advance directives have engaged with the issue of
onus of proof if undue influence is alleged, it is submitted that the person alleging such influence must discharge the onus of proof. Support for this assertion can be drawn from the analogous situation where it is claimed that undue influence was exercised over a testator when executing a will. Case authority in both England and Australia provides that the onus of proving undue influence in such a case rests on the party who alleges it: Boyse v Rossborough (1857) 10 ER 1 1 92 at 1211 and Winter v Crichton (1991) 23 NSWLR 116 at 121 .
85 [2003) 2 FLR 408.
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time of execution, and that it applies to the situation that has arisen. To this extent, it is appropriate to suggest that a person who claims its existence and applicability should lead evidence to that effect. However, if the court is satisfied of these factors, it is questionable whether the same person should be required to prove its continued existence. The court, at this point, should require the person claiming that the advance directive was no longer in existence to discharge the burden of proving this. While Munby J concedes that a person asserting that the advance directive is no longer operative must point to something suggesting why this may be so, at no stage does his Honour suggest that a person claiming invalidity has an onus to discharge. His Honour falls short of suggesting that, once the validity and applicability of the advance directive is established in the first instance, the onus shifts to the person disputing the continued validity and applicability of the advance directive to prove that on the balance of probabilities.
There also seems to be an inconsistency about the extent to which the validity or applicability of the directive needs to be called into question. At one stage in his judgment, Munby J suggests that there needs to b e 'some real reason to doubt' its validity or applicability, while elsewhere he suggests that 'if there is doubt that doubt falls to be resolved in favour of the preservation of life'. The latter phrase seems to suggest that something less than a 'real reason to doubt' may b e all that is required.
Further, Munby J's assertion regarding the onus of proving the continued validity and applicability is not supported by the three authorities on which he purports to rely: Re T (Adult: Refusal of Treatment),86 Airedale NHS Trust v Bland87 and Re AK (Medical Treatment: Consent). 88 The relevant extracts from the cases that are cited by Munby J urge caution in interpreting an advance directive, and make it clear that if there is doubt, the sanctity of life is favoured. However, there is no suggestion that a person claiming that the advance directive should govern treatment must discharge any onus of proof. To this extent, Munby J's claim that a person has such an onus is not based on legal precedent.
A different approach, and, it is submitted, one more consistent with authority, was taken by McDougall J in Hunter and New England Area Health Service v A. 89 When considering whether the advance directive was valid and applicable to the situation, his Honour made the following comments:
There is a presumption that an adult is capable of deciding whether to consent to or to refuse medical treatment. However, the presumption is rebuttable . . . . If there is genuine and reasonable doubt as to the validity of an advance care directive, or as to whether it applies in the situation
86 [1 993] Fam 95. 87 [1993] AC 789. 88 [2001] FLR 129. 89 [2009] NSWSC 761.
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at hand, a hospital or medical practitioner should apply promptly to the court for its aid.90
Two observations are relevant here. First, McDougall J does not refer to any obligation on a party to prove the continuing validity and applicability of the advance directive. The implication is that if the advance directive was valid when executed and is applicable to the situation that has arisen, the prima facie position is that it should be followed. This is in conflict with Munby J's position. Secondly, McDougall J suggests that the advance directive should be challenged only if there is a 'genuine and real doubt' regarding its validity or applicability. This puts the test somewhat higher than that articulated by Munby J.
The second cause for legal concern arising from Munby J's statements is that statements about the burden of proof are premised on the fact that the matter has come before the court in an adversarial context. This will not always be the case. A hospital, for example, may seek declaratory relief about whether it is bound to follow an advance directive that had been completed by an incompetent patient who now requires treatment to save his or her life.91 In such a case, there is no 'person seeking to establish the validity and applicability of the directive' in the sense of actively advocating that the advance directive should b e followed. It is unclear how Munby J suggests the onus of proof would be discharged in such a situation.
(b) Practical Concerns
Munby J's approach also raises concerns on a practical level, namely the limited number of cases in which a person will be able to discharge the onus and standard of proof that is advocated by his Honour. Imposing an onus about the 'continuing validity' on an individual is problematic. Take the hypothetical case of an adult who had been a practising Jehovah's Witness all of her life. At age 30, she completes an advance directive refusing blood products in all situations. This advance directive is kept with her general practitioner. Ten years later, she is involved in a car accident and is taken to a hospital where a decision must be made about a blood transfusion that is needed to save her life. The treating team is aware of her advance directive as they have contacted her doctor. This woman is still a Jehovah's Witness but she has not discussed her faith with her doctor since completing the advance directive. The hospital brings an application to court seeking declaratory relief. Applying the dicta of
90 Ibid. [40(7)]-[40(8)]. 91 S ee, for example, Hunter and New England Area Health Service v A [2009]
NSWSC 761, where the Health Service was seeking declaratory relief about the validity of the advance directive completed by the adult.
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Munby J, the onus of establishing the continuing validity and applicability of the advance directive could not be satisfied. First, the applicant (the hospital) is not 'seeking to establish' the existence, continuing validity or applicability of the advance directive in the sense of arguing for a particular position. Secondly, there is no evidence at all of its continuing validity. The only evidence is of its original validity. Does this mean that the advance directive could be ignored? Would the situation be the same if the woman in question had been in the car accident only one year, one month, or one day after completing the advance directive?
A related but separate concern is Munby J's observation that the continuing validity and applicability of an advance directive must be established by 'clear and convincing proof'. While stating that the test is the usual civil standard of proof on the balance of probabilities, Munby J notes that the evidence must be stronger and more cogent because of the gravity of the matter.92 There is a practical difficulty with requiring clear and convincing proof of the advance directive's continuing validity and applicability. The case of HE v A Hospital NHS Trus&3 itself illustrates this concern. This case involved a Muslim woman, AE, who was raised by a Jehovah's Witness, and who had signed an advance directive refusing blood products. At the time of its execution, AE must have been emphatic about her desire not to receive blood products because the directive also contained a clause providing that the directive could only be revoked in writing. Almost two years later, when contemplating surgery, she confirmed her desire not to receive blood products, and these instructions formed part of the hospital notes. Five months after that verbal confirmation, the validity of the directive was challenged, and the court held that there was not clear and convincing evidence of the directive's continuing validity and applicability. The medical professionals were authorized to treat AE in a way that promoted her best interests. In coming to this decision, the court relied on verbal evidence of AE's father, a Muslim, that she changed her faith four months prior to the hearing, which was one month after she told her doctor that she did not want blood products. This evidence contradicted that of AE's mother, a Jehovah's Witness, who advised hospital staff on AE's admission that AB continued to be of the Jehovah's Witness faith.
In this case, the adult had gone to significant lengths to set out her wish to refuse blood products. A formal document was drawn up, and that document included a clause saying that the refusal was absolute
92 Munby J has subsequently reiterated his view about the need for 'clear and convincing proof' in relation to an advance directive refusing life-sustaining measures: The Queen (on the application of DJ) v The Mental Health Review Tribunal [2005] EWHC 587 at [61]. Note, however, criticisms of Munby J's approach when this case went on appeal to the Court of Appeal: R (on the application of AN) v The Mental Health Review Tribunal (Northern Region) [2006] QB 468.
93 [2003] 2 FLR 408.
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and not to be overridden in any circumstances by a purported consent of a relative or other person. If a formal document of the kind used in this case coupled with a later verbal confirmation that it still represented her wishes do not constitute 'clear and convincing proof' of its continuing validity, it is difficult to envisage a case where this standard of proof could be satisfied.
The approach taken by Munby J regarding the onus of proof is difficult to justify and not consistent with established legal principles. The practical consequences of such an approach, particularly in light of the requirement for the standard of proof to be 'clear and convincing', is that it is unlikely that an individual's advance directive refusing treatment will be followed. It is submitted that the approach taken by McDougall J in Hunter and New England Area Health Service v A94 should be preferred as it is consistent with legal authority, and more likely to result in outcomes that were intended by the individual who made the advance directive.
(c) Effect of Statutory Reform It is unlikely that legislation has affected the common law principles that have been discussed above about burden and standard of proof. In the United Kingdom and in a number of the statutes in Australia, the legislation contains a presumption that an adult has capacity for a particular decision.95 As such, evidence must be produced before that presumption can be rebutted. In the United Kingdom, the legislation specifically provides that the standard of proof is on the balance of probabilities.96
Also relevant to issues of proof is the protection that is provided by the Mental Capacity Act 2005 (UK) to a medical professional who is confronted with an advance refusal. He or she does not incur liability for carrying out treatment unless 'satisfied' that an advance decision refusing treatment has been given.97 There is no requirement that the medical professional act reasonably in forming that view.98 This is in contrast to the protection afforded if treatment is withheld pursuant to an advance decision. In the latter case, a medical professional is protected only if he or she 'reasonably believed' that the advance
94 [2009] NSWSC 761. 95 In the United Kingdom, see Mental Capacity Act 2005 (UK), s . 1(2). In Australia,
see the legislation of Queensland and Western Australia: Guardianship and Administration Act 2000 (Qld), sch. 1, s. 1; Guardianship and Administration Act 1990 (WA), s. 4(1)(b) respectively.
96 Mental Capacity Act 2005 (UK), s. 2(4). 97 Mental Capacity Act 2005 (UK), s. 26(2). Compare the Queensland legislation
which excuses a medical professional from ignoring an advance directive that refuses treatment if he or she has reasonable grounds to believe that the direction is 'contrary to good medical practice': Powers of Attorney Act 1998 (Qld), s . 103.
98 Note that the Mental Capacity Act 2005 (UK), Code of Practice [9.58] provides that a medical professional would not be 'satisfied' if he or she had 'genuine doubts' about the advance decision.
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decision was applicable.99 Where there is doubt, the matter can be resolved by the Court of Protection. Given the failure of the legislation to impose an objective standard that the medical professional be 'satisfied' about the advance decision, and given the identified reluctance of courts to uphold advance decisions that refuse treatment, it can be predicted that courts may readily be persuaded that a medical professional is not 'satisfied' that an advance decision applies to treatment. If this occurs, medical professionals could, in reality, receive a considerable amount of protection should they not comply with an advance decision to refuse treatment.100
VI. Inappropriate Adjudication by Judicial or Quasi-judicial Bodies
From a strictly legal perspective, the most alarming feature arising from a review of the case law is the inappropriate conduct of judicial (or quasi-judicial) bodies in hearing matters relating to the refusal of treatment. Although some cases are brought in an emergency context, the lack of familiarity with or ability to apply legal principles is a recurring theme. This inappropriate adjudication manifests itself in two ways: operational irregularities or failures, and a failure to apply correct legal principles.
i. Operational Irregularities or Failures
An important case from the Australian State of Victoria concerning refusal of blood products may well have been decided differently had the determining body more appropriately discharged its duties. Qumsieh's case101 involved Q, a Jehovah's Witness, who needed a blood transfusion to sustain her life following the birth of her child. Q had previously indicated that she did not want to receive blood products due to her religious beliefs. Despite his wife's expressed position regarding blood transfusions, Q's husband brought an application to the Victorian Guardianship and Administration Board for the appointment of a substitute decision-maker to make a decision about medical treatment on Q's behalf.
The hearing was attended by Q's husband, his solicitor and the hospital's solicitor. The board was advised that Q did not want to receive a blood transfusion and was also given the consent form in which she refused blood or blood products in the context of treatment to be carried out under anaesthetic. The board was not advised why Q refused such products, nor was it given a copy of her 'Advance Medical Directive' which contained a blanket refusal of blood products.
99 Mental Capacity Act 2005 (UK), s. 26(3). 100 For further consideration of this issue, see Bartlett, above n. 49 at 82-3 and
Maclean, above n. 6. 101 Unreported decision, Victorian Guarcliansbip and Administration Board, L
Pilgrim, 24 February 1998.
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Being satisfied that Q was no longer able to make medical decisions for herself, the board appointed the Public Advocate as her guardian, and her husband was ordered to be the delegated guardian of the Public Advocate. He made a decision to allow the transfusion.102
The decision of the board was flawed because it did not ensure that it had received all information relevant to its determination.103 The board should have asked the parties why Q refused a blood transfusion, and whether it had before it all relevant documentation in relation to that refusal. Not seeking such crucial evidence constituted a failure by the board at an operational or practical level. Had the board been advised that Q refused blood because of her religious beliefs, and had read her Advance Medical Directive refusing blood products, it is unlikely that it would have concluded that:
. . . [i]t had no evidence before it that the proposed represented person did not want a guardian appointed to make health care decisions, outside her wishes expressed in the . . . informed consent form . . . which was limited to an examination under anaesthetic.104
Instead, the board is likely to have dismissed the application for the appointment of a guardian on the basis that the adult, while still competent, had indicated that she did not want to receive the proposed treatment in the situation that arose.105
ii. Failure to Apply Correct Legal Principles
Cases in which an urgent determination must be made about whether life-sustaining treatment should be administered to a person who might otherwise die but who has indicated an objection to that treatment are difficult. They are often brought before a court at short notice, facts might be sketchy and legal argument is unlikely to be comprehensive. Nevertheless, it is a concern when incorrect legal principles are applied, particularly where the j udgments signal that the application of legal principle and exploration of the adult's wishes
102 The board's decision was unsuccessfully reviewed by Beach J of the Supreme Court of Victoria. A transcription was not made of his Honour's reasons for his decision to decline the application to review. The Supreme Court of Victoria Court of Appeal dismissed an appeal against the decision of Beach J in Qumsieh v The Guardianship and Administration Board [1998] VSCA 45. For comment on the decision of the Court of Appeal, see section VIII.i below.
103 Pursuant to the then s. 10(3) of the Guardianship and Administration Act 1986 (Vie), the board was not bound by rules or practice as to evidence but was empowered to inform itself in relation to any matter in such manner as it thought fit.
104 As cited in Qumsieh v The Guardianship and Administration Board [1998] VSCA 45, [8].
105 For a further example of a procedural irregularity, although in the context of a contemporaneous refusal of blood products, see Fitzpatrick v K [2008] IEHC 104 where K refused a blood transfusion following the birth of her child. The hospital brought an ex parte application to the High Court for a direction that K receive blood. K, although conscious for most of the relevant time, was neither advised of the application, nor was legal counsel appointed on her behalf to represent her position.
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are secondary to the overall desire to sanction the provision of lifesustaining treatment.
(a) Failure to Consider Whether Statements Constitute an Advance Directive The decision of Muir J of the Queensland Supreme Court in State of Qld v Astil1106 is illustrative of this concern. The hospital brought an application to the Supreme Court to administer a blood transfusion to A, a Jehovah's Witness, contrary to the views expressed in her advance directive. J.:s daughter wanted her mother to receive the transfusion, while her two sons wanted the hospital to adhere to their mother's wishes to refuse treatment. The court ordered the transfusion to be given if a medical practitioner considered it necessary in order to save her life or to enhance her prospects of recovery. In other words, J.:s expressed wishes were not followed. Of concern is how that decision was reached.
At the outset of its judgment, the court considered the advance directive completed by A. Because it did not comply with the formalities of the relevant Queensland legislation, Muir J held that it 'had no efficacy'. The problem is that Muir J did not then consider whether the document completed by A still constituted a common law advance directive and, if it did, whether that directive would be binding on the treating team. This failure was crucial. If it were held to be a common law advance directive, that conclusion being highly probable on the facts of the case, then the court should have considered whether, under the Queensland legislation, that advance directive would be b inding. If it were, that should have been the end of the matter and the court may have dismissed the hospital's application. J.:s wishes would have been respected, and the transfusions not given.107
(b) Misguided Reliance on Precedent In W Healthcare NHS Trust v H, 108 the English Court of Appeal had to determine whether earlier statements made by KH constituted an
106 Unreported decision, Supreme Court of Queensland, Muir J, 18 January 2006. 107 A similar misunderstanding of the true nature of an advance directive has
occurred in other jurisdictions. See, for example, Werth v Taylor 475 NW 2d 426 (1991), another case involving a Jehovah's Witness who completed an advance refusal of blood products. In that case, the Michigan Court of Appeals held that the provision of blood products contrary to the advance directive did not constitute an assault because her directive 'had not been made when her life was hanging in the balance or when it appeared that death might be a possibility if a transfusion were not given': 475 NW 2d 426 (1991), [150]. By its very nature, however, an advance directive must be given in advance of the medical incident arising. Further, there was no evidence that the maker of the directive contemplated that the directive should only be relied upon in a non-lifethreatening context.
108 [2005] 1 WLR 834.
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advance directive not to reinsert the feeding tube after it became
dislodged. If they did, then that directive dictated treatment, and
health professionals would not be entitled to reinsert the tube. The
only issue for determination was whether KH's prior statements were
sufficiently clear to constitute an advance directive. It is surprising,
therefore, why, in the context of the discussion of the legal effect of
KH's statements, the court observed that:
. . . there has been no case in the books to date in which the court has sanctioned the withdrawal of treatment which is simply providing, in effect, the equivalent of food and drink for anybody other than somebody in a permanent vegetative state (in other words, someone who has no feeling of anything whatsoever).109
This reference to previous case law on withdrawing or withholding
artificial hydration and nutrition to individuals in a persistent vegetat
ive state is misguided. This quote appears to be referring to the cases
that have authorized withdrawal of artificial nutrition and hydration
from individuals in a persistent vegetative state. The legal principle
which supports withdrawal in such cases is that the treatment, the
provision of artificial nutrition and hydration, is futile. The court ap
pears to be suggesting that withdrawal or withholding may not be
futile where the individual is not in a persistent vegetative state. How
ever, such authority should not have been relevant in the case before
it. Instead, the court should have considered the cases on advance
directives. If KH had given an advance directive that refused artificial
hydration and nutrition, the treatment should not have been given.
Whether or not the treatment could be regarded as futile would be
irrelevant. In other words, cases concerning medical futility raise
completely different issues from those about advance directives and,
therefore, should have been irrelevant to the court's consideration of
whether, in the case before it, the feeding tube should have been
reinserted on the grounds of KH's prior statements.
(c) Effect of Statutory Reform
The concerns examined above stem from an apparent lack of familiar
ity of some judicial and quasi-judicial bodies with the relevant legal
principles. This position is perhaps not surprising given the relqtive
scarcity of case law in this field, and the urgent context in which many
of these cases must be decided. Statutory reform is unlikely to have a
direct impact on the familiarity with legal principles in those jurisdic
tions in which the common law continues to operate. However, legis
lative enshrinement of an individual's right to complete an advance
109 Ibid. 839-40.
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directive that refuses life-sustaining treatment is a positive step in the
direction of clarity and certainty. Legislation removes lingering
doubts about the enforceability of advance directives, and clearly
articulates the circumstances in which such refusals will be valid and applicable.
VII. Strained Interpretation of Facts
The apparent reluctance of the j udiciary to uphold an advance direct
ive that refuses life-sustaining measures is also evident from how
some courts interpret the evidence that is presented to them. In some
of the cases where following an advance directive would result in a
p erson's death, the judges have interpreted the facts in a strained way,
in an app arent attempt to reach a more 'palatable' result. In such cases, courts have made findings of fact that have resulted in the
person's advance directive not b eing followed. Arguably, such find
ings are less open on the evidence than findings that the advance
directive was valid and applicable to the medical situation that had
arisen. This paper suggests that there are two contexts in which
courts are likely to interpret the facts in a strained way: in assessing
whether the individual had sufficient capacity at the time of completing the advance directive, and in assessing whether the individual
would have intended the advance directive to apply in the circum
stances that had subsequently arisen.
i. Assessment of Competence
B efore considering the approach taken by the courts to assessment of
competence, the following observations may be worth considering.
The cases in which the capacity of a person is called into question
generally involve an unconventional treatment decision being made,
and dire consequences flowing from that decision. The capacity of a
person is rarely, if ever, j udicially considered in cases where a person
accepts treatment that is medically indicated. These facts invite
speculation on two levels . First, would the cases that were ultimately
judicially determined have reached the court if the person had
accepted rather than refused treatment? In other words, would the
person's capacity have been called into question? Secondly, if the
same person accepted treatment and his or her capacity had been
judicially determined, would the court have reached a finding of in
capacity? If the first question is answered in the negative, questions
may be raised about the medical profession's ethical stance on estab
lishing and assessing capacity of an adult to consent to treatment. If
the second question is answered in the negative, questions must be
asked about the legitimacy of the judicial determination of a person's
capacity.
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Late last century, there were a number of cases in which the capacity of a pregnant woman to make decisions about medical treatment was called into question.110 Such situations commonly arose where the woman wanted to refuse treatment, and that refusal placed the woman's foetus (and perhaps herself) at risk. In a number of cases, the courts found that the woman lacked the necessary capacity to make decisions about her own health care, thereby enabling treatment to be given on the b asis of the woman's 'best interests'.111 As such, the welfare of the foetus was also safeguarded. Some commentators suggested that courts have been quick to come to this conclusion because the decision made by the pregnant woman is not one that sits comfortably with many individuals in mainstream society and, therefore, the woman must lack capacity. 112 In other words, the focus has been on the apparent anti-social decision made by the woman that could put her foetus at risk, rather than on an objective assessment of her capacity to come to a decision.
Similar temptations confront courts in the context of an individual who refuses life-sustaining medical treatment in circumstances where most members of our community would accept such treatment. The concern is that there may be a tendency to find that a person lacks
1 10 See, for example, Re S (Adult: Refusal of Medical Treatment) [1992) 4 All ER 671; Norfolk and Norwich Healthcare (NHS) Trust v W [1996) 2 FLR 613; Rochdale Healthcare (NHS) Trust v C, unreported decision, Johnson J, 3 July 1996; Re L (Patient: Non-consensual Treatment) [1997) 2 FLR 837; Glossop Acute Services Trust v CH [1996) 1 FLR 762; Re MB (Medical Treatment) [1997) 2 FLR 426; St George's Healthcare NHS Trust v S; R v Collins, ex parte S [1998) 3 All ER 673. In Australia, see State of Queensland v D [2004) 1 QdR 426.
111 Four English cases in particular are illustrative. In Re L (Patient: Non-consensual Treatment) [1997) 2 FLR 837 and Re MB (Medical Treatment) [1997) 2 FLR 426, the woman was held to lack capacity to refuse a caesarean section because of a needle phobia notwithstanding that the woman in each case did not suffer from any psychiatric condition. In the first instance decision of Hogg J in St George's Health care NHS Trust v S; R v Collins, ex parte S, her Honour granted a declaration dispensing with consent to treatment without investigating the extent to which the woman lacked capacity. Her Honour was aware only that the woman had been admitted under the Mental Health Act 1983 for an assessment of her mental and psychiatric condition, and that 'moderate depression' had been diagnosed. In Rochdale Health care (NHS) Trust v C, unreported decision, Johnson J, 3 July 1996, his Honour found that the woman lacked capacity despite the opinion expressed by the obstetrician that she was 'fully competent' and without any other medical evidence to the contrary.
112 Indeed, this argument was advanced by counsel for the pregnant woman in Re MB (Medical Treatment) [1997) 2 FLR 426 at 436, Mr Francis commenting that 'both in the Rochdale Health care case and in Re L the judge misapplied the C test by evaluating competence by reference to the irrationality of the decision'. See also R. Bailey-Harris, 'Pregnancy, Autonomy and Refusal of Medical Treatment' (1998) 114 The Law Quarterly Review 550 who comments on the various legal techniques, including finding the woman temporarily incompetent, that are used to authorize a Caesarean section notwithstanding the woman's refusal; and Maclean, above n. 6 at 3 where the author refers to the 'fragility of the patient's self-determination in the face of preserving valued life in the Caesarean section cases'.
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capacity because he or she refuses life-sustaining treatment in circumstances where most individuals would act differently.113
The judiciary itself has cautioned medical professionals against assuming incapacity on the basis of a patient making a decision contrary to medical advice. In a case involving a woman with tetraplegia who wished to be taken off artificial ventilation, and where the treating clinicians refused to act on her direction, the court noted and concurred with the following comments of an expert witness:
. . . the clinicians started from the decision made by Ms B, and not from the assessment of her competence. They looked too much at the decision, which was contrary to their advice and which they would not endorse, and not enough at the surrounding circumstances. The clinicians were unable to accept her views and deal with them.114
While these comments were directed at medical professionals, it is submitted that some judges struggle with the same temptation. The argument is that, at the outset, the judiciary is drawn to a conclusion that the adult lacks capacity because of the uncomfortable and socially unacceptable treatment choice he or she has made. To support this finding of incapacity, the courts stretch or strain the facts in a way that they would not do if the adult had made a different treatment choice. The following case raises questions about the ability or preparedness of courts to make a finding of capacity in circumstances where that finding may effectively uphold a refusal of treatment that would result in an individual's death.
NHS Trust v T (Adult Patient: Refusal of Medical Treatment]115 involved an assessment of T's capacity to complete an advance directive refusing blood transfusions. T engaged solicitors to draft her advance refusal, and the document contained two reasons for her refusal. First, to use her words:
. . . because I am caught in a vicious circle . . . too difficult for me to continue enduring. I am not aware of when I am cutting myself, and therefore cannot prevent my [haemoglobin] dropping very low periodically. Having a transfusion does not resolve this problem in the long term, only causes stress to myself.116
S econdly, she b elieved her blood was 'evil' and, once the transfused blood mixed with her blood, it also became evil.
There was mixed evidence about T's capacity. T's general practitioner had written a letter stating that T understood the nature and effect of the directive, and this letter was attached to the directive. The specialist medical evidence presented at the hearing was divided.
113 For a comment on the ease with which judges are able to come to a decision that an individual lacks capacity in the context of the refusal of life-sustaining medical treatment, see also Munby QC, above n. 65 at 325-7.
114 Re B (Adult: Refusal of Medical Treatment) [2002] 2 All ER 449 at 468. 115 [2005] 1 All ER 387. 116 Ibid. [8].
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Nevertheless, the court held that T lacked capacity to complete an advance directive.
This case was undoubtedly a difficult one. T was suffering from a long-term, probably untreatable, personality disorder which resulted in self-harming behaviour. However, there was consistent and undisputed evidence that T did not want to receive blood transfusions: T consistently made contemporaneous refusals of blood (before being persuaded to accept the transfusion); she attempted to formalize that refusal by approaching solicitors to draft a written advance directive; when given blood contrary to the written advance directive, she again approached her solicitors to write to the hospital to advise them to respect the directive.
Although the medical evidence about her capacity was not unanimous, there was enough evidence upon which the court could have held T to have capacity. The case is consistent with judicial reluctance to uphold a person's directive where that would result in the person's death.117
It is interesting to compare this case with the earlier decision of the High C ourt in Re C (Adult: Refusal of Medical Treatment), 118 a case involving a 68-year-old man, C, who was suffering from schizophrenia and who refused to undergo an amputation of his leg despite medical advice that he may die without this procedure. C also suffered from a mental illness and again, as in NHS Trust v T (Adult Patient: Refusal of Medical Treatment), 119 the medical evidence was divided about C's capacity to make a refusal about treatment in the future. Nevertheless, the court held that C had capacity to make an advance decision to refuse the amputation. In coming to its decision, the court seemed to take a different approach to the court in NHS Trust v T in an important respect. In the latter case, the court was heavily influenced by T's belief that her blood was 'evil', a belief integrally related to her mental illness. In contrast, despite C's oral evidence that he had an international career in medicine during which he had never lost a patient, the court held that C's delusions did not affect his ability to make a decision about amputation. In other words, there was a greater preparedness to conclude that a person could have capacity to make a treatment decision, despite having a mental illness.120
117 There is evidence of this kind of judicial reluctance in other jurisdictions. See, for example, Fitzpatrick v K [2008] IEHC 104, a case involving the contemporaneous refusal of blood products. In the plenary hearing of the matter in the High Court, Laffoy J held that K lacked capacity at the time she refused treatment, notwithstanding a decision to the contrary by Abbott J on the earlier ex parte application and the contrary evidence of the medical staff at the ex parte application.
118 [1994] 1 All ER 819. 119 [2005] 1 All ER 387. 120 Note the suggestion by Maclean, above n. 6 at 5, that the court may have been
more inclined to uphold the advance refusal in this case as C was a 'dangerous schizophrenic who had stabbed someone and whose life, arguably, was simply a burden for society'.
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ii. Assessment of Whether an Adult Intended an Advance Directive to Apply to the Situation that Arose
A medical professional should only comply with an advance directive that refuses life-sustaining medical treatment if the person intended it to apply in the situation that later arose. As part of this assessment, it must be determined whether the terms of the advance directive are sufficiently clear to govern treatment. If there is a reasonable doubt about the person's intentions, it would be contrary to the law, morality and public policy to refuse treatment and allow the person to die. However, an individual's autonomy will be undermined if the court places too high a standard on the degree of specificity required for the advance directive to operate.
There are a number of decisions in which the assessments by courts of what the adult intended are difficult to sustain. The first, W Healthcare NHS Trust v H, 121 involved an application brought by a hospital to reinsert a percutaneous gastrostomy (PEG) tube into a 59-year-old woman, KH, who had suffered from multiple sclerosis for about 30 years. Her family and friends opposed the reinsertion and argued that such action was contrary to the previously expressed views of KH . The woman's daughter gave evidence that before KH moved into a nursing home, she told her daughter that she did not want to be kept alive by machines. A close friend of KH, Mrs N, also gave evidence . KH told Mrs N repeatedly that she did not ever want to be a burden to her daughters if she could not look after herself. If she had to go to hospital, and the time came when she could no longer recognize the girls, she did not want to be kept alive. KH had reiterated these statements as her condition deteriorated and she became more dependent on the nursing staff. Mrs N had no doubt that, in her current state of health, KH would want to be allowed to die in peace.
Despite this undisputed and apparently credible evidence, the Court of Appeal held that the conversations that KH had with her daughter and close friend did not constitute advance directives relevant to the situation before it. The conversations, according to the court, were not sufficiently clear and referable to the particular circumstance. Although it was conceded that the statements made by KH would be sufficient to refuse life-support machines, they were not specific enough to operate as a 'direction that she preferred to be deprived of food and drink for a period of time which would lead to her death in all circumstances'. 122
It is submitted that the approach of the C ourt of Appeal was too narrow. There was clear evidence that KH did not want to be kept alive in these circumstances. The fact that she did not specify the
121 [2005] 1 WLR 834. 122 Ibid. 840.
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medical treatment that she wished to refuse should have been irrelevant. If it would b e lawful for a competent person to refuse the particular life-sustaining measure in question, then the fact that that p articular treatment was not specified by KH should not be a reason for ignoring her advance refusal of treatment.
The English decision of Re T (Adult: Refusal of Treatment), 123 although regarded as a case about contemporaneous refusal rather than an advance refusal, also raised the issue of the scope of the adult's refusal, and whether it extended to the medical situation that arose. T, who had been losing blood since the birth of her child, indicated to the treating team that she did not want to receive blood products because she still retained some beliefs of the Jehovah's Witness faith. There was uncontested evidence that this statement was made on a number of occasions, and that T also signed a refusal of blood form. There was also evidence of conversations between T and medical professionals that it was unlikely that there would be a need for a blood transfusion, and of T's understanding that non-blood products could be used frequently in substitution for blood. Ward J, at first instance, held that T's refusal did not apply to the situation that arose, because she refused blood in circumstances where she did not b elieve blood would be needed to save her life. This decision was upheld by the Court of Appeal. To support his findings, Ward J relied on evidence of T's father, not a Jehovah's Witness, that T would rather receive blood than die.
The problem with this decision is that there was clear evidence that T did not want blood products. There was no suggestion in the evidence that T's refusal was only intended to apply if her life were not at risk. In fact, at the times the refusals were given, T's health was seriously compromised and her condition was deteriorating. The court strained the facts that were before it to justify not following T's refusal of treatment.
(a) Effect of Statutory Reform This section of the paper has examined the approach taken by the courts when confronted with a case involving the refusal of lifesustaining medical treatment. The argument is that courts are reluctant to make a determination that results in withholding or withdrawing treatment that is medically indicated. To reach such a determination, the judiciary sometimes must strain the facts before it. It is submitted that this reluctance to reach a conclusion that may result in a person's death is unlikely to alter as a result of legislative reform. However, such reform may indirectly address the problem. The legislation generally requires an advance directive to be in writing and, in some jurisdictions, requires it to be in a prescribed form.
1 23 [1993] Fam 95.
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Further, the Mental Capacity Act 2005 provides that an advance decision will only be effective if the document specifies that the refusal will operate 'even if life is at risk'.124 Such requirements may result in clearer instructions being given, and therefore provide less opportunity for the judiciary to read down or misinterpret a person's instructions.
Nevertheless, there are some issues arising from the Mental C apacity Act 2005 (UK) in terms of whether an advance directive will govern treatment which may require judicial interpretation. One example is section 25(2)(c) which provides that an advance decision is not valid if the individual 'has done anything else clearly inconsistent with the advance decision remaining his fixed decision' (emphasis added). The interpretation given to the words 'clearly inconsistent' will obviously directly affect the extent to which a person's decision will operate. Yet, those words are capable of either a wide or narrow interpretation.125 A further, but related, example is whether the inconsistent action must be taken while the adult still has capacity. The legislation is silent on this point, and arguably either interpretation may be taken.126 Again, the judicial interpretation of this issue will affect the extent to which a person's autonomous choice will govern treatment.
Vlli. Rhetoric and Approach in Judgments Reveal Preference for the Principle of Sanctity of Life
The focus of the previous three sections of this paper has been on legal errors made, or surprising approaches taken by the courts when deciding whether advance directives should dictate treatment. The submission of this paper is that such errors or unconventional approaches have occurred because (at least some) judges are anxious to decide cases in a particular way, namely that life-sustaining medical treatment should not be withheld from an incompetent individual pursuant to an instruction in an advance directive so that he or she is left to die. This hypothesis is also supported by how the judgments are crafted, including the words and expressions chosen to convey the decision and the reasons for it, and a failure to engage with the importance of the principle of self-determination. The language used by individuals can portray important information about their underlying beliefs and values, and these beliefs and values can and do
124 Mental Capacity Act 2005 (UK), s. 25(5)(a). 1 25 See, for example, Mental Capacity Act 2005 (UK), Code of Practice in [9.43] which
suggests that changes in a person's personal life, for example, through pregnancy may be sufficient to affect the validity of an advance decision.
1 26 For a further consideration of this issue, see Maclean, above n. 6.
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influence decisions that are made.127 It is submitted that this is particularly evident in the cases examined in this paper, the choice of words and expressions conveying the underlying beliefs and values of many judges that the principle of sanctity of life should prevail unless that determination is simply indefensible on the facts before them.
i. Lack of Discussion of or Emphasis on the Principle of Self-determination
The advance directive cases contain many examples that indicate the overriding importance placed on the sanctity of life, even in the face of compelling evidence that the individual concerned would rather not be kept alive. The p ersistent emphasis on the sanctity of life, even while, at times, espousing the rhetoric of the paramountcy of selfdetermination, subtly suggests that sanctity of life should be the preferred principle where the principles conflict.
The decision of B each J of the Victorian Supreme Court in Qumsieh's case provides such an example. The Guardianship and Administration Board appointed Q's husband to be his wife's guardian, and he decided that a transfusion should be given to his wife despite her prior refusal in two formal documents. Beach J was asked to review the board's decision. In exercising his discretion not to do so, Beach J commented that 'the order [of the board] was made to save her life and no court would contemplate exercising its discretion to grant a remedy'.128 Given that the common law requires a person's advance directive to prevail over the decision of a substitute decisionmaker regarding treatment, this attitude is surprising. Beach J's comments provide insight into his views, namely that preserving Q's life was the ultimate goal of the Guardianship and Administration Board's deliberation, even if her wish was that she not be given a blood transfusion. As Q's life was s aved, she should not be entitled to relief in the form of a review of the board's decision. Such an approach is consistent with the notion that sanctity of life should prevail over selfdetermination.
Similar views were expressed by the Court of Appeal of Victoria on appeal.129 In dismissing Q's appeal, the court agreed with the determination of Beach J that 'no matter of substantial importance was involved' which required the board's decision to be reviewed.130
1 27 For a comparative analysis of how the personal views of judges in another medical context, sperm harvesting cases, can affect or inform the outcomes, see M. Leiboff, 'Post-mortem sperm harvesting, conception and the law: rationality or religiosity?' (2006) 6(2) Queensland University of Technology Law and Justice Joumal 1 .
1 28 [1998] VSCA 45 at [11] . 1 29 [1998] VSCA 45. 130 Ibid. at [19] . There were a number of factors detailed at para. [19] which drew the
Court of Appeal to this conclusion including the 'large number and variety of grounds upon which the appellant was seeking to challenge the Board's decision, the number of respondents whom the appellant desired to be made parties . . . , the fact that the matter involved an order, now exhausted, made by a body whose
330
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Again, this conclusion is concerning. The comments reveal the same approach taken at first instance. The court did not accept the proposition that the board had sufficient information before it to make 'alarm bells ring', and appeared to be satisfied as to how the hearing was conducted by the board. The Court of Appeal judgment did not reveal any concern about the expressed wishes of an individual to refuse treatment being ignored. Implicit in this judgment is the lack of acknowledgement of the paramountcy of the principle of selfdetermination.131
The language used by the English Court of Appeal in W Healthcare NHS Trust v Ff132 also conveyed the court's emphasis on the sanctity of life, without similar regard to self-determination. Here, the court was required to determine whether previous statements made by a 59-year-old woman suffering from multiple sclerosis constituted a common law advance directive. After recounting the undisputed facts, the court set out the relevant law. This description of the law commenced with the following statements:
English law places a very high value on life. The value that English law places on life is now reiterated by art 2 of the European Convention on Human Rights . . . which recited that everyone's right to life shall be protected by law.133
The court proceeded to describe the law that applies where a patient loses competence and a decision needs to be made about his or her treatment. Reference was made to the two different legal regimes that operate: the best interests test and the substituted judgment test. Interestingly, in the course of this consideration, the court did not emphasize, in addition to 'life', that an individual's right to selfdetermination was also valued highly under English law, a fact equally relevant to a discussion of this area of law. Such an omission flags this court's view about the relative importance of the principles of sanctity of life and self-determination.
The language used by Muir J of the Supreme Court of Queensland in State of Queensland v Astill134 also provides insight into his Honour's perspective of what is important in making determinations about life-sustaining medical treatment. The failure of the court to consider whether the formal document signed by A, a Jehovah's Witness, in which she refused blood transfusions constituted a common law advance directive, was considered earlier. More generally, in the
statutory powers and functions have changed, and the fact that the order, if made, would bring the appellant into dispute with her husband'. However, the major issue considered by the Court of Appeal in its judgment was the conduct of the board in its hearing.
131 See Hamblin, above n. 6, who opines that this case highlights the judicial reluctance to uphold previously stated refusals where that would result in the adult's death.
132 [2005] 1 WLR 834. 133 Ibid. 837. 134 Unreported decision, Supreme Court of Queensland, Muir J, 18 January 2006.
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course of his j udgment, Muir J made some comments which suggested that other considerations were more important than following Ns stated wishes . To cite one example:
Were [A] able to be consulted, no doubt she would wish to weigh the impact on her daughter should she die as a result of the accident and should her death result from the lack of a blood transfusion.135
Muir J seems to be imposing his own view of morality on A. Implicit in his statement is the view that Xs concern for how her daughter may feel should prevail over her earlier, clearly stated wishes regarding treatment. This postulation was in conflict with the evidence of Ns sons who insisted she would not have wanted a blood transfusion. Again, it is concerning that the principle of self-determination was not given the significance that it is accorded under common law. Other factors were regarded as more important on the facts of this case.136
The recent approach taken by McDougall J in Hunter and New England Area Health Service v A137 is more encouraging. The judgment itself tracked how the principle of autonomy had been judicially recognized in several jurisdictions. There was a clear and repeated reference to the supremacy of this principle over that of the sanctity of life. Indeed, one section of the judgment was headed 'Supremacy of the individual's right'.
The emphasis given by McDougall J to the principle of autonomy is encouraging. However, as illustrated by the above analysis, it is not reflective of the approach taken by many of the judges who make determinations about the validity and applicability of advance directives.
ii. Use of Emotive and Value-laden Words
There are also examples in the judgments of language which positions those reading the judgments to take a particular view of the facts . This is done subtly, but often powerfully. The courts have used emotive and value-laden language in their inquiry of whether 'doubt' exists in an advance directive purporting to refuse life-sustaining medical treatment. At times, courts have summarized or described the evidence about the advance directive in a manner which draws the reader to only one conclusion, that there is some doubt as to whether the individual intended to refuse the life-sustaining medical treatment in the situation that arose. The carefully chosen words used by the judges are crafted to convince the public that the directive given, or words used by the individual in question, could not be regarded as an advance directive refusing treatment. On a more objective view of the evidence, an individual may not consider there to be any doubt in the
135 Ibid. p. 4 of transcript of proceedings. 136 In addition to how the daughter would feel if A died, the court considered the fact
that transfusions had already been given, and the views expressed by all family members: p. 4 of transcript of proceedings.
137 [2009) NSWSC 761.
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words used or directive given by the adult. The following example is illustrative of this contention.
In W Healthcare NHS Trust v H,138 there was undisputed evidence before the court that H did not want to be 'kept alive by machines', did not want to be kept alive if she could no longer recognize her girls, and wanted to enjoy only the 'best quality of life'. Nevertheless, the court held that these statements did not constitute a common law advance directive to refuse the reinsertion of a PEG upon its displacement. The court framed the question to be decided in the following way:
. . . the matter that has to be determined . . . is whether . . . when she b ecame incapable [H] would choose what would be a distressing form of death by starvation over a period of two to three weeks as opposed to remaining alive, not in pain or particular discomfort, and that she never addressed her mind to that particular choice. 139
When phrased in this way, it is not surprising that the court held that she had not intended her previous statements to apply in the medical situation that required determination.
Another example of language which indicates that the courts would rather find that the advance directive refusing treatment did not operate can be found in HE v A Hospital NHS Trust. 140 The court held that the adult did not intend her prior formal refusal of blood transfusions to apply in the circumstances before it. Munby J commented that: ' . . . the question of whether an advance directive admittedly made at some time in the past is still valid and applicable may require especially dose, rigorous and anxious scrutiny' (emphasis added) .141
Once again, Munby J's approach can be contrasted with that of McDougall J in Hunter and New England Area Health Service v A. 142
The approach taken by McDougall J and the language that he employs indicate his desire to give effect to the wishes of the individual, despite the potentially significant nature of the outcome:
. . . if there is any real doubt as to the sufficiency of an advance refusal of medkal treatment, the court should undertake a careful analysis. But the analysis should start by respecting the proposition that a competent
138 [2005] 1 WLR 834. 139 Ibid. at 839. 140 [2003] 2 FLR 408. 141 Ibid. at [25]. For further examples of the use of emotive language used in
judgments, see W Health care NHS Trust v H [2005] 1 WLR 834 at 842 where the English Court of Appeal put the test in the following terms: 'English law . . . places a very heavy burden on those who are advocating a course which would lead inevitably to the cessation of a human life'; and Werth v TayJor 475 NW 2d 426 (1991) at 430 where the Michigan Court of Appeals was not prepared to find a medical professional liable for assault even though he knowingly provided a blood transfusion contrary to the patient's instructions in a formal advance directive. In deciding that the directive was not applicable in these circumstances, the court remarked that '(h]er prior refusals had not been made when her life was hanging in the balance' (emphasis added).
142 [2009] NSWSC 761.
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individual's right to self-determination prevails over the State's interest in the preservation of life even though the individual's exercise of that right may result in his or her death. An over-careful scrutiny of the material may well have the effect of undermining or even negating the exercise of that right. It is necessary to bear in mind that not all those who execute advance care directives are legally trained. Their words should not be scrutinized with the care given to a particularly obscure legislative expression of the will of Parliament [emphasis added].143
As can be seen, McDougall J's words are in stark contrast to those used by Munby J in justifying his decision not to comply with a directive refusing treatment.
{a) Effect of Statutory Reform This section has analysed how judgments have been crafted to support or justify particular judicial outcomes. The approaches taken by judges in communicating their decisions are unlikely to be affected by statutory reform. As flagged earlier in the paper, it is likely to be the case that when adjudicating on matters arising under legislation, outcomes will continue to be driven by views about desirability of advance directives that refuse treatment. It is anticipated, therefore, that judgments will continue to contain. emotive language to justify the decision reached.
IX. Conclusions
The sanctity of life is a fundamental principle in a liberal democracy, and this is reflected in the common law that relates to refusing medical treatment. It is also recognized that this principle yields to that of respect for individual autonomy and self-determination in the context of refusing life-sustaining medical treatment either contemporaneously or through an advance directive. To a large extent, this also reflects the position in those jurisdictions in which legislative reform has occurred. In the United Kingdom, for example, an individual can complete an advance refusal of life-sustaining medical treatment that will bind medical professionals. Yet, an examination of the relevant common law cases on advance directives in England and Australia reveals some concerns about the extent to which the established hierarchy of autonomy prevailing over sanctity of life reflects reality, at least in the context of the courtroom. Further, there is no reason to believe that the approach that will be taken by the judiciary in interpreting statutory provisions will afford autonomy any higher recognition.
The cases dealt with in this paper are difficult. They raise the emotive issues of death and dying, religious values and quality of life, generally in the context of a difficult medical event or situation, and
143 Ibid. at [36)-[37].
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sometimes against a backdrop of complex family dynamics. The cons equences of the decisions are grave, as a finding of validity and applicability of an advance directive will effectively result in the death of a vulnerable individual. Although there are relatively few cases that have considered the validity and applicability of advance directives, an analysis of those cases reveals some concerning trends for individuals who value the right to determine their own medical treatment. Those trends are reflected in the case law of both England and Australia. This paper argues that, in many of these decisions, the underlying beliefs and views of the particular members of the judiciary who are determining the matter drive the outcomes. More specifically, despite the clarity of the law on the supremacy of autonomy and selfdetermination and the rhetoric to that effect in the judgments, some judges simply regard the sanctity of life as the more compelling principle, and allow that principle to dictate the outcome.
This paper does not argue that this approach is taken in all judgments or by all members of the j udiciary. Indeed, the approach taken recently by McDougall J of the New S outh Wales Supreme Court reveals not only a willingness, but a concerted attempt to determine the individual's wishes, notwithstanding that complying with such wishes would result in his death. Despite this encouraging judgment, the failure to truly embrace principles of autonomy can be observed in the majority of the cases concerning advance directives. There is certainly significant evidence of this trend in many of the decisions on advance directives.
It is, and should be, the case that where doubt exists, an advance directive refusing treatment should not be followed. In such a situation, it is appropriate for the judiciary to err 'in favour of life'. However, the case law suggests that many judges are biased in favour of life, even in the absence of doubt, and this bias can and does drive outcomes. The result is dangerous at two levels. First, there are examples where the outcome has not been the desired one for the individual who is the subj ect of litigation, and whose previous statements about treatment have been ignored. Secondly, there are implications for our society more broadly. The decisions signal a warning to individuals who wish to ensure that their death occurs in circumstances that are acceptable to them: it is unsafe to assume that the judiciary will practise what it preaches, and allow the principle of s elf-determination to prevail over that of s anctity of life.
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C ase
Re C (Adult: Refusal of Medical Treatment) [1994] 1 All ER 8 19 High Court, Family Division
Re AK (Medical Treatment: Consent) [2001] 1 FLR 129 High Court, Family Division
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Appendix
Facts
C was a 68-year-old man suffering from paranoid schizophrenia. He lived in a secure hospital and was serving a seven-year period of imprisonment. C was also suffering from peripheral vascular disease which led to gangrene in his foot. The treating team predicted that unless his leg was amputated from b eneath the knee, C had an 85 per cent chance of dying. C did not consent to the amputation and, following more conservative treatment, C's condition improved. C's condition placed him at risk in the future, and the hospital indicated that amputation may be necessary. C sought an injunction restraining the hospital from carrying out an amputation without his express written consent.
AK was a 19-year-old man suffering from motor neurone disease, and made an advance directive at an advanced stage of the disease. He was on a ventilator and could only communicate through moving one eyelid to indicate 'yes' or 'no' to questions put to him . His instructions were that his ventilation should cease two weeks after he could no longer communicate. The hospital sought a declaration that it would be lawful for the treating team to follow AK's instructions. At the time the
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Decision
The injunction was granted. It is implicit in this decision that the adult's prior refusal constituted a valid advance directive and, unless the adult's circumstances altered in the future, should be followed.
The adult's communication was held to constitute an advance directive which was valid and applicable, and should be followed.
ADVANCE DIRECTIVES REFUSING TREATMENT AS AN EXPRESSION OF AUTONOMY
C ase
HE v A Hospital NHS Trust [2003] 2 FLR 408 High Court, Family Division
W Healthcare NHS Trust v H [2005] 1 WLR 834 Court of Appeal, C ivil Division
Facts
matter was heard, AK was still able to communicate through limited movement of one eyelid.
AE, although born a Muslim, was raised by her mother as a Jehovah's Witness. When she was 24, AE signed an advance directive refusing blood products. This directive also contained a clause providing that the directive could only be revoked in writing. Almost two years later, she saw a doctor about her heart disease. In contemplation of surgery, she advised her doctor that she did not wish to have blood products. Five months later, AE became seriously ill and was rushed to hospital. The hospital advised that she needed a blood transfusion to save her life, but her mother and brother said that AE would not want to receive a transfusion. AE's father brought an application to the court seeking an order that the advance directive no longer applied and directing the hospital to carry out the transfusion.
KH was a 59-year-old woman who had suffered from multiple sclerosis for about 30 years. She was being kept alive through a percutaneous gastrostomy (PEG) tube which had become dislodged. A decision had to be made whether it should be reinserted. The hospital brought an application to the court seeking approval to reinsert the PEG
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Decision
The adult's advance directive was held not to be valid and applicable, and should not be followed.
The appeal was dismissed. The adult's previous statements were held not to constitute a valid and applicable advance directive and should not be followed.
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C ase
NHS Trust v T (Adult Patient: Refusal of Medical Treatment) [2005] 1 All ER 387 High C ourt, Family Division
338
Facts
tube. There was evidence before the court that KH previously directed that she did not wish to receive treatment in these circumstances. The hospital's application was granted at first instance, and KH's brother and one of her daughters appealed against that decision.
T was a 37 -year-old woman who suffered from a borderline personality disorder. She had a long history of self-harm by cutting herself and bloodletting. T was frequently admitted to hospital after such incidents and given life-saving blood transfusions. She often refused such treatment initially, but was always subsequently persuaded by health professionals to accept the transfusion. In January 2004, T approached solicitors to assist her to draft an advance directive refusing blood transfusions to operate in any subsequent hospital admission. Despite this advance directive, T was provided with a further transfusion in April of the same year, the hospital receiving authorization from a duty judge to do so. Following release from the hospital, T again approached her solicitors who wrote to the hospital advising it that T stood by her advance directive. The hospital applied to the Family Division for directions.
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Decision
The adult's advance directive was held not to be valid, and should not be followed.
ADVANCE DIRECTIVES REFUSING TREATMENT AS AN EXPRESSION OF AUTONOMY
Case
Qumsieh's case Victorian Guardianship and Administration Board Unreported decision, Guardianship and Administration Board, L Pilgrim, 24 February 1998
Facts
Q, a Jehovah's Witness, was admitted to hospital for the birth of her first child. She had earlier signed a document headed 'Advance Medical Directive' in which she refused blood products, and signed a form consenting to the administration of anaesthetics but added 'with the exception of blood transfusion or blood products'. Complications occurred following the delivery of her child, and Q needed a blood transfusion to save her life. Given her prior refusal of blood products, the hospital refused to provide her with a transfusion. With his wife's death imminent, her husband, also a Jehovah's Witness, sought legal advice and an application was brought to the Victorian Guardianship and Administration Board on the same day.
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Decision
The board appointed the adult's husband as decision-maker (as the delegated guardian of the Public Advocate) and the husband consented to the transfusion. The effect of the board's decision was that the adult's advance directive was not followed.
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Case
Supreme Court of Victoria Unreported decision, Supreme Court of Victoria, Beach J, 7 May 1998
Supreme Court of Victoria, Court of Appeal [1998] VSCA 45
High Court of Australia Qumsieh v Pilgrim M98/1998, 29 October 1999, 1 1 February 2000
State of Qld v Astill Unreported decision, Supreme Court of Queensland, Muir J, 18 January 2006
Hunter and New England Area Health Service v A [2009] NSWSC 761 Supreme Court of New South Wales
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Facts
A, a Jehovah's Witness, had been involved in a serious car accident, the car having been driven by her daughter. A was given a blood transfusion at the scene and transported to hospital where further transfusions were administered. On learning that A had completed an advance directive refusing blood products, the hospital brought an application to the Supreme Court seeking an order to provide her with blood products .
A, a Jehovah's Witness, completed a document called a 'worksheet' in which he expressly refused the medical treatment of dialysis. About a year later, A was admitted to the emergency department of the hospital suffering from septic shock and respiratory failure. A:s condition deteriorated and he was being
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Decision
The court declined Q's application to review the decision of the board.
The court dismissed Q's appeal against the decision of B each J.
The court declined leave to review the decision of the Court of Appeal.
The court ordered that the treating medical practitioner be entitled to provide the adult with a blood transfusion if that was necessary to save her life. The effect of the decision was that the adult's advance directive was not followed.
The court held that the document constituted an advance directive and should be followed.
Case
ADVANCE DIRECTIVES REFUSING TREA1MENT AS AN EXPRESSION OF AUTONOMY
Facts
kept alive by mechanical ventilation and kidney dialysis. The hospital brought an action to determine whether the document constituted a valid advance directive and should be followed.
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Decision
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CHAPTER 5 - ADVANCE DIRECTIVES TO
WITHHOLD LIFE-SUSTAINING MEDICAL
TREATMENT: ERO D ING AUTONOMY THROUGH
STATUTORY REFORM
'ERODING AUTONOMY THROUGH STATUTORY REFORM'
Lindy Willmott
(2 007) 10 Flinders journal of Law Reform 287
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CHAPTER 6 - REFUSING ADVANCE REFUSALS:
ADVANCE DIRECTIVES AND LIFE-SUSTAINING
MEDICAL TREATMENT
'REFUSING ADVANCE REFUSALS'
Lindy Willmott, Ben White and Michelle Howard
(2 006) 3 0 Melbourne University Law Review 2 1 1
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CHAPTER 7 - ADVANCE DIRECTIVES AND THE
PROMOTION OF AUTONOMY: A COMPARATIVE
AUSTRALIAN STATUTORY ANALYSIS
'A COMPARATIVE AUSTRALIAN STATUTORY
ANALYSIS'
Lindy Willmott
(20 10) 17 journal of Law and Medicine 5 5 6
2 1 9
PART 3 : GENERAL D ISCUSSION
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CHAPTER 8 - D ISCUSSION
8.1 Main features linking the publications - cumulative effect
of the papers
8 . 1. 1 Overview
The gaps in the literature about the extent to which current legal regulation promotes
autonomy in the context of advance directives that refuse life-sustaining medical
treatment were explored in chapter 2. While there is some commentary in the United
Kingdom that critiques some of the English case law on advance directives, there is
no research that comprehensively reviews the case law in Australia and England, or
comprehensively reviews the statutory regimes in Australia. This thesis undertakes
that review and critique.
The principal objectives of this research are to identify how the common law in
Australia and England and legislation in Australia regulate advance directives that
refuse life-sustaining medical treatment, and to critically evaluate the extent to which
this regulation promotes the value of autonomy. The five papers that comprise this
thesis seek to achieve these objectives. To do this, the research had the following
specific aims:
Aims relating to the selection of a normative framework:
• To identify those cases in Australia and England that considered the
principles that underpin the common law on advance directives (aim 1 . 1 ) ;
• To review those decisions to evaluate how the common law balances the
principles of autonomy and sanctity of life, and why autonomy was chosen as
the prevailing principle to guide the development of the common law when
assessing whether an advance directive that refuses life-sustaining medical
treatment should be followed (aim 1 .2 ) ;
247
• To locate and revww the parliamentary debates in relevant Australian
jurisdictions to detennine the legal and policy justifications for enacting
legislation on advance directives (aim 1 .3) ;
• To settle upon a definition of autonomy that is adequate for the purpose of
this thesis (aim 1 .4);
• To detennine whether autonomy, as identified by the conunon law and
(inferentially) in the parliamentary debates, can be justified as an appropriate
framework to underpin legal regulation of advance directives (aim 1 . 5) ;
• To examine the arguments that have been advanced against autonomy as an
appropriate standard in the context of legal regulation of advance directives,
and critique whether the justification of autonomy is sound in light of those
criticisms (aim 1 .6) .
Aims relating to identification, synthesis and critique of the common law:
• To identify all of the publicly available common law decisions in Australia
and England that consider whether or not an individual 's advance directive
that refuses life-sustaining medical treatment should be relied upon to
determine treatment (aim 2 . 1 ) ;
• 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 has arisen, and when a medical professional is excused for not
following it (aim 2 .2) ;
• To conduct a detailed review and critique of the common law cases. This is
carried out by analysing the judgments in the conunon law decisions that
have been identified, and undertaking both a legal and a limited theoretical
critique of those decisions (aim 3 . 1 ) ;
• To identify barriers (in addition to those identified under aim 3 . 1 ) that may
exist in the absence of statutory regulation, which militate against a common
law advance directive that refuses life-sustaining treatment being followed
(aim 3 . 2) .
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Aims relating to the identification and critique of legislation:
• To identify the legislation that has been enacted in the Australian States and
Territories (aim 2 .3) ;
• To review those statutes to examine the way in which advance directives are
regulated (aim 2 .4); and
• To conduct a detailed review and critique of the legislative regimes governing
advance directives to assess the extent to which statutory provisions promote
or restrict the exercise of autonomy by competent individuals (aim 3 . 3) .
In the next section of this chapter, I will discuss how the five papers achieve these
specific aims and, in so doing, the principal objectives of the research. The headings
that are used below reflect those used in chapter 1 under 'Account of research
progress: Linking the research papers' .
8.1.2 Autonomy as an appropriate normative framework
This thesis identified autonomy as a normative framework that is appropriate and
justifiable. The claim is not that autonomy is the only organising principle that could
be used to assess legal regulation, but is one that is justifiable given the subject
matter of the thesis. The thesis developed its normative framework firstly by
identifying the ro le that autonomy plays in the common law and also as a motivating
factor in the enactment of advance directive legislation in Australia. It then explored
whether there are grounds that support this position that has been taken by the
judiciary and legislature. This inquiry also considered the criticisms levelled at
autonomy as an organising principle. Finally, the thesis identified precisely what
criteria should guide the content of legislation if the goal of regulation is to promote
individual autonomy by maximising the likelihood of a competent adult 's advance
directive governing future treatment.
The first paper, 'Law, autonomy and advance directives' , commenced the exercise of
establishing a normative framework by examining the common law relevant to
advance directives and identifying the principles that are expressed to underpin
249
them. 1 As explained in the paper, if an advance directive is valid and applies to the
medical situation that has later arisen, it will govern medical treatment. The paper
continued that there are two ethical principles with which the courts have engaged in
developing the common law : the sanctity of life and autonomy. While the courts
acknowledge the interest of the state in promoting and protecting the sanctity of life,
and the importance of the sanctity of life as an underpi1ming principle in many facets
of law, they also conclude that this principle is trumped by autonomy when
considering a competent person's entitlement to complete an advance directive that
refuses life-sustaining medical treatment .
While the first paper focused on the common law, the fifth paper, 'A comparative
Australian statutory analysis ' , considered the principles that underpin statutory
regulation.2 These principles are discerned through an examination of parliamentary
debates. Although there is relatively limited use of the term 'autonomy' in those
debates, the expressed purpose of enacting legislation was to enshrine the common
law in statutes. This was thought to be necessary, again according to the
parliamentary debates, because of the perceived uncertainty regarding whether the
co1mnon law, as enunciated in the English case law, applied in Australia. Despite the
limited express reference to 'autonomy', for the most part, parliaments were seeking
to enshrine the right of a competent adult to complete an advance directive refusing
medical treatment that would be binding if capacity was later lost. In this way,
legislation also promoted the principle of autonomy, and that principle prevailed over
the sanctity of life.
Having established that autonomy underpins the common law and statutory regimes,
the next step was to consider whether such a position is justifiable. This was also
explored in 'Law, autonomy and advance directives ' where three arguments in
support of this position were developed. 3 The first is that the principle of autonomy
1 First paper, Lindy Willmott, Ben White and Ben Mathews, 'Law, autonomy and advance directives' (20 1 0) Journal of Law and Medicine, II Advance directives and autonomy at common law. 2 Fifth paper, Lindy Willmott, 'Advance directives and the promotion of autonomy: A comparative Australian statutory analysis' (20 1 0) 1 7 Journal of Law and Medicine 556, expressed significance of autonomy in common law and statutory regulation. 3 First paper, Willmott, White and Mathews, above n 1 , Ill Autonomy justi fies legal recognition of advance directives.
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is consistent with the principles and values that are prioritised in a liberal democracy.
As explained in some depth in this paper, the central plank in a liberal democracy is
the ability of competent individuals to act free from unjustified interference from the
state or others. Preventing an individual from completing an advance directive that
refuses treatment would constitute unjustifiable interference. Secondly, the principle
of autonomy is consistent with prevailing principles in medical ethics discourse.
Over recent decades, the principle of autonomy has become a dominant theory in
medical ethics, prevailing over the principle of beneficience where there is conflict.
Finally, the principle of autonomy is consistent with the common law that governs
contemporaneous (rather than advance) refusals of life-sustaining medical treatment.
As explained, it is neither consistent nor logical to permit a competent adult to refuse
treatment contemporaneously, yet prohibit that choice where the person wishes to do
so in advance.
To defend autonomy as a nonnative framework more comprehensively, 'Law,
autonomy and advance directives ' also engaged with the criticisms that are levelled
at autonomy in the context of regulating advance directives.4 These criticisms are
both at the theoretical and practical levels. There are two theoretical or global
criticisms. The first is that an advance directive that is completed by an individual
when he or she has competence to do so lacks the moral authority to dictate treatment
(or non-treatment) of the same individual who has now lost capacity, and who may
have different views and wishes including about medical treatment. This argument
has particular force when dealing with a person who has dementia and whose very
nature and way of life have altered significantly as a result of the disease. While
there is merit to this argument, for the reasons explained in the paper, the more
compelling argument is that the views of the person who has decision-making
capacity, and specifically turns his or her mind to a contingency of loss of mental
capacity, should prevail over the views of an individual who lacks this capacity. The
second theoretical or global criticism is that there are other preferable models, for
example, those based on beneficience that should guide treatment decisions for
individuals who lack capacity. Such alternatives, however, risk a return to
paternalism and are no longer justifiable in contemporary times.
4 Ibid, IV Responding to critiques of autonomy and advance directives.
2 5 1
Critics also point to the following perceived shortcomings with advance directives
that refuse treatment that arise in the clinical setting:
1 . It is unlikely that an advance directive would be based on sufficient
information;
2. A person' s treatment choices are not stable and may alter once his or her
health deteriorates;
3 . The directive may not be a true reflection of that person's treatment wishes;
and
4. The information contained in the directive may not be helpful in a clinical
context.
Some of these concerns are more persuasive than others. The fourth point is not
troublesome. If the information is not helpful, then the advance directive can be
ignored and a treatment decision is obtained through another channel. The first point
also lacks merit. A competent person is able to make a contemporaneous treatment
decision without being informed of treatment (or non-treatment) options or
consequences. The same should be the case when deciding about treatment in
advance. The second and third points raise more serious concerns and are considered
in more depth in the paper. In brief, the major thrust of the response is that it is
possible that making a treatment decision in advance may carry with it some element
of risk. Steps should be taken to educate the public, to the extent that this is feasible,
to ensure that individuals are informed about the risks of completing advance
directives and how to minimise them. However, in a liberal democracy, the right to
make future decisions through an advance directive should not be denied to a person
because he or she made what appears to be an objectively 'bad ' decision, or was less
responsible with the drafting of the directive.
In summary, while some of these global and practical criticisms have merit and are
shared by a number of commentators, the fifth paper argued that the reasons
advanced for supporting autonomy as an organising principle are more compelling
than the concerns or shortfalls that are proffered.
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The final stage in establishing autonomy as the normative framework for this thesis,
was giving a meaning to the concept which enabled legal regulation to be critiqued
against it. This exercise was undertaken in the fifth paper, 'A comparative
Australian statutory analysis ' . 5 It was observed in ' Law, autonomy and advance
directives ' that there is extensive l iterature on the various meanings attributed to the
tenn 'autonomy' . For the purpose of that paper, however, the following definition
was adopted:
Autonomy (literally, self rule) is, in summary, the capacity to think, decide and act on the basis of such thought and decision freely and independently and without . . . hindrance. 6
To use autonomy as a normative framework, this concept had to have meaning in the
context of the legal regulation of advance directives. Paper five achieved this by
suggesting that any form of regulation should embody the following two
components. First, it was necessary to distil the relevant common law principles that
regulate advance directives. This is essential because it has been uniformly
recognised that common law principles, as enunciated in the case law, prioritise
autonomy. At common law, an advance directive will be followed if it is valid, the
adult was not subject to undue influence or any other vitiating factor when
completing the directive, and the adult intended the directive to operate in the
medical situation that has ultimately arisen. A model of legal regulation that
facilitates an advance directive refusing treatment being followed if those elements
are satisfied will be one that is consistent with autonomy. The second component
was to consider the practical barriers that exist at common law that may restrict the
circumstances in which an advance directive is followed. If regulation can limit the
extent to which these barriers operate, advance directives may be followed more
frequently, thereby promoting autonomy. Both of these components were explored
in more detail in the fifth paper.
5 Fifth paper, Willmott, 'Advance directives and the promotion of autonomy: A comparative Australian statutory analysis ' , above n 2, Essence of autonomy at common law and practical barriers to recognising advance directives at common law. 6 R Gillon, 'Autonomy and the principle of respect for autonomy' ( 1985) 290 British Medical Journal 1 806, 1 806 extracted in SL Lowe, ' Autonomous agency and consent in the treatment of the terminally ill' in AH Maehle and J Geyer-Kordesch (eds), Historical and Philosophical Perspectives on Biomedical Ethics: From Paternalism to Autonomy (Aldershot, 2002) 129, 130.
253
In summary, the first and fifth papers in this thesis achieved the objective of
establishing the normative framework against which models of legal regulation can
be assessed.
8.1.3 Description and critique of the common law
The common law is an important component of legal regulation that was examined in
this thesis. The thesis sought to achieve its objectives of identifying, synthesising
and critiquing the common law in four stages. First, it outlined the common law
principles that govern when an advance directive will operate, and reviewed relevant
cases. Secondly, it reviewed when a medical professional will be excused from
following an advance directive that refuses life-sustaining medical treatment.
Thirdly, the thesis undertook a comprehensive legal critique and a limited theoretical
critique of the common law cases, by reviewing all of the publicly available
decisions in Australia and England to examine the approach taken by the judiciary
when considering whether an advance directive that refuses life-sustaining medical
treatment should be followed. Finally, the thesis considered whether there are
factors, other than the approach taken by some members of the judiciary, which
operate as barriers to advance directives being followed.
The first stage, outlining the common law principles that govern the operation of
advance directives and reviewing relevant co1mnon law cases, was undertaken
predominantly in the first and second papers, 'Law, autonomy and advance
directives ' and 'Do the courts practise what they preach?' 7 To be valid, the adult
must possess the requisite capacity, and be free from undue influence (or other
vitiating factors) when the directive is completed. The law on this point is
reasonably well settled, and the major point of controversy is how the judiciary
7 First paper, Willmott, White and Mathews, above n 1 , II Advance directives and autonomy at common law; and second paper, Lindy Willmott, 'Advance directives refusing treatment as an expression of autonomy: Do the courts practise what they preach? ' (2009) 3 8 (4) Common Law World Review 295, all sections except Ill Statutory reform. These principles are also considered in the third paper, Lindy Willmott, 'Advance directives to withhold life-sustaining medical treatment: Eroding autonomy through statutory reform ' (2007) 1 0 Flinders Journal of Law Reform 287, but in summary format.
254
applies the legal principles such as the capacity of the adult to complete the advance
directive, in the circumstances of a particular case. 8
The second stage was to consider the circumstances in which a medical professional
will be excused from not following the advance directive. Generally speaking, this
will occur if the adult did not, or possibly did not, intend the directive to operate in
the situation that later arose. These factors were considered predominantly in the
fourth paper, 'Refusing advance refusals ' ,9
and comprise the following: where there
has been a change in circumstances since the adult completed the advance directive
to an extent that the adult would not have intended the directive to apply in the
changed circumstances; the directive is uncertain or ambiguous; the directive was
based on incorrect information or assumptions such that a medical professional could
not be confident that the adult would have intended it to apply in the circumstances;
and the directive could not be regarded as having provided a decision in the situation
that has arisen.
The third stage reviewed the publicly available decisions, and is a critical component
of the thesis. A thorough analysis of the relevant judgments to understand how
judges arrive at their decisions about advance directives was undertaken. The second
paper, 'Do the courts practise what they preach? ' , critically reviewed the judgments
and concluded that, despite the fact that the principle of autonomy is stated to prevail
over the sanctity of life, some members of the judiciary appear to be uncomfortable
in upholding the autonomous choice of an adult to refuse treatment when that choice
is made in an advance directive. 1 0 A comprehensive legal critique was undertaken
8 It should be observed, however, that the issues of whether an advance directive must be based on sufficient information to be valid, and the standard of proof required about the existence, continuing validity, and applicability of an advance directive also raise difficulties. These issues are considered below under the third stage of the review. 9 Fourth paper, Lindy Willmott, Ben White and Michelle Howard, ' Refusing advance refusals: Advance directives and life-sustaining medical treatment' (2006) 30 Melbourne University Law Review 2 1 1 , Excuses for non-compliance with common law advance directives. These factors are also considered, again to a lesser extent, in the first paper, Willmott, White and Mathews, above n 1 . 1 0 Second paper, Willmott, ' Advance directives refusing treatment as an expression of autonomy: Do the courts practise what they preach? ', above n 7, V Unprincipled evolution of common law principles; VI Inappropriate adjudication by judicial or quasi-judicial bodies; VII Strained interpretation of facts; VIII Rhetoric and approach in judgments reveal preference for the principle of sanctity of life. This issue was also considered briefly in the third paper, Willmott, 'Advance directives to withhold life-sustaining medical treatment: Eroding autonomy through statutory reform',
255
by the second paper 'Do the courts practise what they preach? ' , and that critique
identified factors to support the contention that the judiciary is reluctant to uphold
such directives. First, the cases revealed an unprincipled evolution of common law
principles. This was evidenced by the suggestions that an advance directive will
only be valid if it is based on sufficient knowledge or information, and the burden of
proof that must be discharged in relation to the existence, continuing validity and
applicability of the advance directive. 1 1
For the reasons explained in the second
paper, it must be queried whether these principles, as articulated in some of the cases,
can be justified. Secondly, the cases revealed some concerning aspects of
inappropriate adjudication. This included operational irregularities of failures, such
as the failure to make inquiries about the existence of an advance directive, and
failure to apply correct legal principles in cases that come before the courts or
tribunals.
The thesis also contained a limited theoretical critique. The second paper relied on
the above matters identified through the legal critique to conclude that the common
law was not effective in facilitating a competent adult ' s right of self-determination
through the completion of an advance directive refusing treatment. As well as the
above legal critique, this conclusion was reached by considering the sometimes
strained interpretation of the facts by the adjudicating bodies, as well as having an
apparent preference for the principle of sanctity of life as evidenced by the rhetoric
used and the approach taken in the judgments .
Finally, the fifth paper, 'A comparative Australian statutory analysis ' , considered
practical barriers, in addition to those considered in 'Do the courts practise what they
preach? ' , which may contribute to non-compliance with an advance directive by a
medical professional. 1 2 Two types of barriers were identified: legitimate and
illegitimate barriers. A legitimate barrier refers to those where the medical
above n 7, Ill D Judicial approach to advance directives about withholding and withdrawing lifesustaining measures. 1 1 The judiciary's approach to proof was also considered in the fourth paper, Wilhnott, White and Howard, above n 9, 6 Judicial approaches to proof. 1 2 Fifth paper, Wilhnott, 'Advance directives and the promotion of autonomy: A comparative Australian statutory analysis ' , above n 2, Practical barriers to recognising advance directives at common law.
256
professional may have justifiable or understandable concerns about the validity or
applicability of the directive that refuses treatment . An illegitimate barrier, on the
other hand, is a reference to an unjustifiable reason given by a medical professional
for not following an advance directive. One such example is that he or she is
philosophically opposed to advance directives that refuse treatment. In 'A
comparative Australian statutory analysis ' , it is argued that regulation that seeks to
lessen or remove these barriers is consistent with the promotion of autonomy.
In summary, an important component of the thesis was a review and critique of the
common law. The review of the common law was undertaken predominantly in
papers one, two and four, 'Law, autonomy and advance directives ' , 'Do the courts
practise what they preach?' and 'Refusing advance refusals ' , respectively. The
critique of the common law, including the identification of legitimate and illegitimate
barriers to compliance with advance directives, occurred in the second paper, 'Do the
courts practise what they preach? ' and the fifth paper, 'A comparative Australian
statutory analysis ' .
8.1.4 Description and critique of the statutory regimes
Statutory regulation is the other component of legal regulation that was examined in
this thesis. The legislative regimes were examined in three stages. First, the thesis
identified all o f the relevant statutes that govern advance directives in the various
Australian jurisdictions. Secondly, the thesis reviewed those regimes and articulated
the circumstances in which an advance directive will be valid, can be completed, will
operate and need not be complied with by medical professionals. Finally, the various
restrictions that are imposed by legislation regarding validity, operation and the
requirement (or lack of requirement) that it be followed will be examined as against
the benchmark o f autonomy to determine whether such restrictions are justifiable.
The thesis argues that if the restrictions in the legislation are aimed to promote
autonomy, they are justifiable but, if the restriction or regulation is for a purpose
other than to promote autonomy, it is not justified and should not fonn part of the
regulatory regime.
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The first stage was the identification of legislative regimes that operate in Australia.
While the legislation was identified in all papers, the second paper, 'Do the courts
practise what they preach? ' , 1 3 provided a summary of the legislative regimes that
operate in Australia and provided a brief background to their enactment. 1 4
Legislation has been enacted in six of Australia ' s eight jurisdictions and, in many
jurisdictions, this followed exhaustive law reform commission or governmental
review of the law. Legislation currently operates in the Australian Capital Territory,
the Northern Territory, Queensland, South Australia, Victoria and Western Australia.
The second stage was a review of the Australian legislative regimes. An overview of
the legislative framework was provided in the third paper, 'Eroding autonomy' . 1 5 As
can be seen from that paper, there are significant differences in these statutory
schemes. Variation exists in relation to fonnality requirements, when an advance
directive can be completed and when it can operate. There are also differences in the
excuses that are available to a medical professional who chooses not to follow an
advance directive. These excuses are examined in detail in the fourth paper,
'Refusing advance refusals ' , 1 6 and include a change in the circumstances ofthe adult,
that the adult intended to revoke the advance directive (but had not yet done so),
uncertainty about the meaning of the advance directive and, in Queensland, that the
directive was contrary to goo d medical practice.
The third stage was a critical one. The Australian legislation was critiqued against
the principle of autonomy. The provisions of the legislative regimes were reviewed
13 Second paper, Willmott, 'Advance directives refusing treatment as an expression of autonomy: Do the courts practise what they preach? ' , above n 7, Ill Statutory reform. 1 4 The first paper, Willmott, White and Mathews, above n 1 , also reviewed the Mental Capacity Act 2005 UK in III Advance directives and autonomy under statute. This review was brief and undertaken to provide context for the discussion of autonomy which is the focus of the paper. The thesis does not critique the United Kingdom legislation as against the benchmark of autonomy. 1 5 Willmott, 'Advance directives to withhold life-sustaining medical treatment: Eroding autonomy through statutory reform ', above n 7, the Queensland legislation is reviewed in II Advance directives
in Queensland, and the other jurisdictions in IV Advance directives in other statutory jurisdictions. A brief overview of the statutory regimes was also provided in the fourth paper, Willmott, White and Howard, above n 9, 2.2 Statutory advance refusals. Table 1 in the fifth paper, Willmott, ' Advance directives and the promotion of autonomy: A comparative Australian statutory analysis ' , above n 2, also provided a tabular breakdown of the relevant provisions governing advance directives in all Australian jurisdictions. 1 6 Fourth paper, Willmott, White and Howard, above n 9, 4 Excuses for non-compliance with statutory advance directives.
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and for each category of regulation, an assessment was made of whether the
regulation could be justified on the basis that it promotes the autonomous right of an
individual to complete an advance directive that refuses life-sustaining medical
treatment . This critique was undertaken across a number of the papers. The
Queensland legislation was critiqued in the third paper, 'Eroding autonomy' . 1 7
Special attention was placed on regulation in Queensland because it is one of the
most restrictive o f the legislative models. This paper concluded that the Queensland
legislation erodes autonomy by restricting the extent to which an individual can
complete an advance directive refusing treatment that will operate as contemplated
by the individual. In the fourth paper, 'Refusing advance refusals ' , the excuses that
medical professionals can rely on to justify not following an advance refusal were
critiqued. This particular aspect of regulation received close attention because it has
greater potential to erode individual autonomy. This paper noted that many of these
excuses, namely a change in circumstances, that the adult intended to revoke the
advance directive (but had not yet done so), and uncertainty about the meaning o f the
advance directive, reflect those that exist under the common law. It also observed
that the excuse that exists in Queensland, that the advance directive is inconsistent
with good medical practice, is not one that can be justified as it is at odds with
notions of autonomy. Finally, an exhaustive analysis of all regulatory restrictions
was undertaken in the fifth paper, 'A comparative Australian statutory analysis ' . 1 8
Legislative requirements about capacity, vitiating factors, fonn and witnessing,
provision of information, when an advance directive can be completed and operate,
and when a medical professional need not comply with an advance directive were all
considered. Again, an assessment was undertaken as to whether these provisions can
be justified on the grounds of autonomy. The paper concluded that some of these
provisions can be justified on these grounds, and some cannot.
1 7 Third paper, Willmott, 'Advance directives to withhold life-sustaining medical treatment: Eroding autonomy through statutory reform', above n 7, Critique of legislative regulation of advance directives: a statutory case study. 1 8 Fifth paper, Willmott, 'Advance directives and the promotion of autonomy: A comparative Australian statutory analysis ' , above n 2, Statutory regimes: an overview; Requirements of capacity and absence of vitiating factors; Requirement to provide information; Circumstances in which an advance directive can be completed; Circumstances in which an advance directive can operate; Circumstances in which an advance directive can be ignored.
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In summary, identification of the relevant legislation occurred in all of the papers,
but the second paper, 'Do the courts practise what they preach?' summarised the
legislative regimes and provided a brief background to their enactment . A review of
the legislation occurred predominantly in the third and fourth papers, 'Eroding
autonomy' and 'Refusing advance refusals ' , respectively. Finally, a critique was
undertaken in the third and fourth papers, as well as in the final paper, 'A
comparative Australian statutory analysis ' .
8 . 1.5 Conclusion
Together, the five papers compnse a comprehensive review and critique of the
common law and Australian legislation governing advance directives. The first
paper largely established autonomy as a normative framework against which legal
regulation could be assessed. The remaining four papers undertook the review and
critique ofthe common law and legislation.
The review of the common law that governs advance directives was relatively brief,
as for the most part, the common law requirements for a valid and applicable
advance directive are well settled. As observed in the second paper, the common law
principles that govern advance directives are consistent with notions of autonomy.
The comprehensive critique of the common law judgments, as carried out in the
second paper, however, revealed concerning trends about how some members of the
judiciary applied the common law when asked to adjudicate on whether an advance
directive that refuses life-sustaining medical treatment should operate. This paper
concluded that although the co1mnon law as stated is consistent with autonomy, the
common law as applied, is not.
Papers three, four and five, for the most part, focused on the statutory regimes. The
papers provided a comprehensive review of all Australian legislation. They also
critiqued the legislation from the perspective of whether the nature of the regulation
promoted autonomy. The conclusion reached was that some legislative provisions
could be justified on that basis, but others could not.
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The overall conclusions of this thesis are premised on the fact that the principle of
autonomy is a justifiable one against which to assess the legal regulation of advance
directives. Accepting that to be the case, conclusions about the adequacy of the
common law and existing Australian legislation can be drawn. Comment can also be
made about the shape that future regulation should take. The overall conclusions of
this thesis can be summarised as follows:
Common law
I . Articulated common law principles governing the validity and applicability of
advance directives are consistent with the principle of autonomy.
2 . The application of those common law principles by courts and tribunals raises
concerns about the extent to which a competent adult 's right to self
detennination through completing an advance directive refusing treatment
will be upheld, should the validity or applicability of the advance directive
require legal adjudication.
3 . Associated with the common law model may be some practical barriers
which result in medical professionals not following advance directives that
refuse treatment .
4 . An alternative form of legal regulation may therefore better promote
autonomy for a competent adult who makes an advance directive refusing
life-sustaining medical treatment.
Existing Australian legislation
5 . Some of the current legislative models in Australia restrict the extent to
which a competent adult ' s advance directive refusing life-sustaining medical
treatment will govern future treatment.
Desirable model of legal regulation
6 . Advance directives should be regulated by statute to address concerns about
the application of common law principles by courts and tribunals, and
practical barriers to compliance with advance directives by medical
professionals. The criterion that should guide the specific content of such
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legislation is whether the relevant provision would promote the principle of
autonomy.
8.2 Original and significant contributions to knowledge
The conclusions at the end of the previous section could only be drawn as a result of
the comprehensive review and critique of the common law and Australian statutes
that were undertaken in this thesis. This section summarises how the thesis provides
original and significant contributi,ans to knowledge in relation to the regulation of
advance directives. This is done by briefly recapping on the literature to date, gaps
in that literature, and how this thesis has filled some of those gaps. The last part of
this section summarises the significance ofthe literature' s findings.
8.2.1 Comprehensive review and critique of common law
The case law regarding the cmmnon law principles that govern the validity and
applicability of advance directives is relatively settled. There is a body of literature
that reviews those common law principles, and a more limited amount that considers
the remedies for non-compliance if a valid and applicable advance directive is not
complied with. Some authors have also critiqued how the common law is applied by
the judiciary. Comparatively little of that literature relates to legal regulation in
Australia.
Chapter two identified a number of gaps in the literature including the lack of a
comprehensive examination and critique of the cmmnon law decisions in Australia
and England.
This thesis filled a number of the gaps that were identified in chapter two . All of the
publicly available common law decisions from Australia and England were identified
and comprehensively reviewed in the second paper, 'Do the courts practise what they
preach? ' The legal critique that was undertaken as part of this review contributed to
existing knowledge by identifying a number of legally significant issues. These were
the extent to which the validity of an advance directive should depend on the
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information possessed by the individual at the time the advance directive was
completed; the standard of proof that the court applies to establish the existence,
continued validity and applicability of an advance directive; and some inadequacies
of adjudication through failure to make necessary and appropriate inquiries, the
failure to apply correct legal principles, and reliance on inapplicable precedents.
The second paper also undertook a limited theoretical critique. The conclusion was
reached that the errors distilled from the legal critique (outlined above) had the effect
of restricting the extent to which the autonomy of a previously competent person was
respected. These errors may arise, at least in part, by a reluctance of some members
of the judiciary to uphold an advance directive that refuses life-sustaining medical
treatment. If this is correct, it raises concerns about the preparedness of some judges
to respect individual autonomy where to do so would result in the death of the person
who completed the directive. The strained interpretation of the facts in some cases,
as well as the rhetoric used and approach taken by some judges indicating a
preference for the sanctity of life, provides further support for this proposition.
8.2.2 Comp rehensive review and critique of statutory regimes
Six Australian States and Territories have enacted legislation that regulates advance
directives, and there is c01mnentary that considers some aspects of those regimes.
Much of that literature is descriptive in nature, with only a limited amount critiquing
the existing legislative regimes. Further, that critique tends to be piecemeal in
nature, as relevant articles critique either one or only a few statutes. A major focus
of the commentary has been on the fact that statutory advance directives, though an
important mechanism, should form just one part of a broader advance care planning
strategy. Concern has also been expressed about the disparate nature of the
legislative schemes in Australia.
Chapter two identified several gaps in the commentary, including an absence of
examination of the rationale for legislative reform, an absence of a comprehensive
review and comparison of the various statutes, and an absence of critique of the
extent to which the legislation effectively embodies common law principles. The
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literature also does not examme whether the legislation effectively promotes the
principle of autonomy.
This thesis has filled most of those gaps. The fifth paper, 'A comparative Australian
statutory analysis ' , contained a detailed review of relevant parliamentary debates,
and provided an explanation of the drivers for reform, as expressed in those debates.
A comprehensive review of the Australian legislation was undertaken predominantly
in the fifth paper, but also in the third and fourth papers, 'Eroding autonomy' and
'Refusing advance refusals ' .
Using autonomy as the normative framework, major aspects of the statutes were
critiqued. The third paper, 'Eroding autonomy', focused particularly on the
Queensland legislative regime, that model being chosen because its provisions are
particularly restrictive in terms of when an advance directive can operate. The fourth
paper, 'Refusing advance refusals ' , focused on when the legislation allows medical
professionals to ignore the directions contained in an advance directive. Drawing the
critique in the third and fourth papers together, and taking the critique to the next
level, the fifth paper, 'A comparative Australian statutory analysis ' , undertook a
theoretical critique of specific provisions in all of the statutes to detennine whether
they could be justified as promoting an individual ' s right of self-determination.
8.2.3 Development of criteria for desirable model of regulation
This thesis revealed shortcomings in both the common law and most legislative
models of regulation. In addition to problems stemming from the application of
common law principles by courts and tribunals, the thesis also identified practical
barriers that may result in medical professionals not following an advance directive
that refuses treatment. The fifth paper, 'A comparative Australian statutory
analysis ' , refers to both legitimate and illegitimate barriers to fo llowing advance
directives, and suggests that a goal of regulation should be to remove such barriers,
to the extent that it is possible to do so.
264
The fifth paper then proposes a way forward for regulation. It explains that
legislation should be enacted, and that legislative reform should have two goals : to
enshrine common law principles regarding validity and applicability of advance
directives, as well as excuses for non-compliance; and to remove barriers to
compliance with advance directives, to the extent that this is legislatively possible.
This kind of analysis, explored in more detail in the fifth paper, has not before been
undertaken.
8.2.4 Significance of findings
It is important to have legal mechanisms that enable competent adults to make
binding decisions about refusing treatment that will operate if and when capacity is
lost at a future time. Such mechanisms enable a competent individual to exercise his
or her right to self-determination regarding medical treatment, which is critical to
give voice to the principle of autonomy.
The findings of this thesis cast doubt on the extent to which current forms of
regulation facilitate the exercise of that right to self-determination. The common law
principles purport to enshrine the principle of autonomy by providing that a valid and
applicable advance directive must be followed. This thesis suggests that confidence
in that common law model may be ill-founded. The way that the common law
principles have been applied provides cause for concern. The adjudicator's decision
may depend on personal preference regarding the respective priority accorded to the
principles of autonomy and sanctity of life.
The thesis has also identified some practical issues that may make medical
professionals reluctant to follow the directive. The significance of these findings is
that, in practical terms, an advance directive that refuses life-sustaining medical
treatment may not be followed if a medical professional has concerns about whether
it should govern treatment, or if is validity or applicability is otherwise challenged in
a judicial or quasi-judicial setting.
265
The thesis also reveals significant shortfalls in many of the legislative models by
restricting the extent to which a statutory advance directive will be effective to refuse
life-sustaining medical treatment in the way desired by the individual concerned.
The legislation around Australia varies considerably in tenns of when an advance
directive refusing treatment can be completed, will operate and will be binding on
medical professionals. Some statutes better facilitate a competent adult completing a
binding advance directive than others. The Western Australian and Australian
Capital Territory statutes are the most progressive in this regard, while the legislation
in Queensland is quite restrictive of a competent adult ' s ability to make a directive
which will bind medical professionals. This means that some jurisdictions promote
individual autonomy more effectively than other jurisdictions.
The thesis is significant as it concludes that an alternative form of regulation to the
common law and most of the existing legislative models is necessary. Regulation of
the kind recmmnended in the thesis is required so that competent individuals who
complete advance directives refusing treatment can have confidence that their
directives will be followed.
8.3 Final remarks
The importance of an individual being able to contemporaneously determine the
medical treatment that he or she wishes to receive or not receive is uniformly
recognised. A competent individual ' s right to do so is one of the central planks of
both medical law and medical ethics. There is also almost uniform support for a
competent adult to be able to decide on future treatment. To reflect that body of
thought, legal mechanisms now exist to enable directions about treatment refusals to
operate after an individual loses competence to make these decisions. As the
population ages and we are being kept alive longer through improved medical
technology, it is likely that more of us will live to an age where decision-making
capacity is lost. Accordingly, it is likely that more of us will choose to avail
ourselves of the opportunity to make treatment decisions in advance.
266
A competent individual will make an advance directive in the belief that the
instructions in the document will prevail when he or she loses capacity. However,
this is not always the case. This thesis has identified some serious problems with
existing regulation. The law must carefully walk a tightrope, balancing the impmiant
principles of sanctity of life and autonomy. This thesis suggests that the law
currently does not have the balance right . More work is needed to formulate a model
of legal regulation that fully embraces the right of a competent adult to refuse
treatment that he or she does not wish to receive at a future time. Any form of
regulation must, of course, contain safeguards to ensure life is not brought to an end
prematurely, against the expressed wishes of the individual. However, the
temptation to impose onerous safeguards to limit the operation of the person' s
advance directive refusing treatment, either through judicial conduct, medical
paternalism, or legislative restrictions, must be resisted. The need for the 'sanctity of
life ' not to overshadow 'autonomy' in this debate was eloquently and insightfully
articulated by McDougall J in the only Australian case yet to have considered the law
on advance directives:
. . . a proper understanding of society's interest in the preservation of life cam1ot be considered without taking into account the constituents, or attributes, of life . In a free and democratic society those attributes include the right of autonomy or self-determination. Thus, one would think, the concept of "life" that is the subject of the State's interest is a concept that has am1exed to it that right (no doubt among others) . 1 9
1 9 Hunter and New England Area Health Service v A (2009) 74 NSWLR 8 8 , [ 1 6] .
267
PART 4: APPENDICES
268
APPENDIX A
Statement of Contribution of Co-Authors for 'Law, Autonomy and
Advance Directives ' Thesis by Published Paper
The a uthors l isted below hav e certified* that:
1 . they meet the criteria for authorship i n that they have partici pated i n the conception, execution, or i nterpretation, of at least that part of the publ ication i n their field of expertise;
2 . they take publ ic responsib i l ity for their part of the publ icatio n , except for the responsi ble a uthor who accepts overall responsi b i l ity for the publ icati on;
3. there are no other authors of the publ ication accordi ng to these criteri a;
4. potential confl icts of i nterest have been disclosed to (a) granti ng bod ies, (b) the editor or pub l i sher of jou rnals or other publ ications, and (c) the head of the responsible acade m ic u n it , a nd
5. they agree t o t h e use of the publ ication i n t h e student's thesis and i t s publ ication o n the Australasian Dig ital Thesis database consistent with a ny l i m itations set by publ isher requ i rements.
I n the case of this chapter:
'Law, Autonomy and Advance Directives ' (20 1 0) 1 8 Journal of Law and Medicine 366 by Lindy Willmott, Ben White and Ben Mathews
Contributor Statement of contribution*
L i n dr Wil l mott Lindy Wi l lmott had the prim ary responsi b i l i ty for the following tasks: ( 1 5 a uthor) • Conceptual is ing the issues to be ex plored i n the paper
• Planning the structure of the paper • Writi ng the first draft of the bul k of the paper which was
S ignature forwarded to the co-authors for comment
29 S eptem ber 201 0 Li ndy Wi l lmott's contri bution was 60% of the total contributions of the authors.
Date
Ben White m ade the followi ng contributions to the article:
Ben White • Contributed to conceptual is ing the issues to be ex plored i n
(2nd author) the paper
• Comm ented on and redrafted segm ents of the draft written by the fi rst and third authors
• Fi nal ised the paper for subm ission to the journal
Ben M athews Ben Mathews made the fol lowi ng contri butions to the article :
(3'd author) • Contributed to conceptual ising the i ssues to be expl ored i n
t h e paper • Responsible for a first draft of a m i nor section of the paper • Comm ented on the d raft written by the first author
269
Principal Su pervisor Confirmation
I have sighted email or other correspondence from al l Co-authors confirm i ng their certifying authorshi p .
Signature
Research Students Centre, Level 4, 88 Musk Avenue, Kelvin Grove Campus, GPO Box 2434. Brisbane OLD 4001 Ph: +6 1 7 3 1 3 8 4475 or 3 1 3 8 5306 e-mail [email protected]
http://www. rsc.qut. edu. au/studentsstaff/ Correct as at: 7-6-1 0
270
APPENDIX B
Statement of Contribution of Co-Authors for 'Refusing Advance
Refusals ' Thesis by Published Paper
The authors l isted below have certified* that:
1 . they meet the criteria for authorship i n that they have partici pated i n the conception, executio n , or i nterpretation, of at least that part of the publ ication i n their f ield of expertise;
2. they take publ ic responsibi l ity for their part of t h e publ ication, except for the responsi b le author who accepts overall responsi b i l ity for the publ ication ;
3. there are no other authors of the publ ication according to these criteria;
4. potential confl icts of i nterest have been disclosed to (a) grant ing bodies, (b) the editor or publ isher of journals or other publ ications, and (c) the head of the responsible academic u n it , and
5. they agree to the use of the publ ication in the student's thesis and its publ ication on the Australasian Digital Thesis d atabase consistent with any l imitations set by publ isher requirements.
In the case of this chapter:
'Refusing Advance Refusals: Advance Directives and Life Sustaining Medical Treatment' (2006) 3 0 Melbourne University Law Review 2 1 1 by Lindy Willmott, Ben White and Michelle Howard
Contributor Statement of contribution*
Lindy W i l l m ott Lindy Wi l lmott had the primary responsi b i l ity for the fol lowing tasks:
( 1 s author) • Conceptual is ing the issues to be expl ored i n the paper • Planning the structure of the paper • Writing the first draft of the paper wh ich was forwarded to
S ignature the co-authors for comment
29 Septem ber 201 0 Li ndy Wi l lmott's contri bution was greater than 50% of the total contri butions of the authors.
Date
Ben White made the foll owi ng contri butions to the article: • Contri buted to conceptual ising the issues to be expl ored in
Ben White the paper
(2nd author) • Commented on the draft written by the fi rst author • Incorporated the comm ents of the co-authors • Drafted the table that summarises key com ponents of the
content of the article • Final ised the paper for su bmission to the journal
M i chel le Howard made the following contri butions to the article: • Contri buted to conceptual is ing the issues to be explored in
M ichelle Howard the paper (3rd author)
• Comm ented on the draft written by the fi rst author • Primary responsi b i l ity for addressi ng the com ments made by
the referees
271
Pri nci pal Su pervisor Confirmation
I have sighted email or other correspondence from all Co-authors confirm i ng their certifyi ng authorsh ip .
bcr1 [J/J;ft Name Signature Date ' 1
Research Students Centre, Level 4, 88 Musk Aven ue, Kelvin Grove Campus, GPO Box 2434. Brisbane O L D 4001 Ph: +6 1 7 3 1 38 4475 or 3 1 38 5306 e-mail [email protected]
http://www. rsc.q ut. ed u . au/studentsstaff/ C orrect as at: 7-6-1 0
272
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287
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Buchanan, A and D Brock, Deciding for Others: The Ethics of Surrogate Decision Making (Cambridge University Press, 1 989)
Cantor, N, Advance Directives and the Pursuit of Death with Dignity (Indiana University Press, 1 993)
Cantor, N, Legal Frontiers of Death and Dying (Indiana University Press, 1 987)
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REPORTS
Advance Directive Review Committee, Planning Ahead: Your Health, Your Money, Your Life, Second Report of the Review of South Australia's Advance Directives (2008)
Advance Directive Review Conunittee, Planning Ahead: Your Health, Your Money, Your Life, First Report of the Review of South Australia's Advance Directives (2008)
Advance Directive Review Cotmnittee, Planning Ahead: Your Health, Your Money, Your Life, An Issues Paper for the Review of South Australia's Advance Directives (2007)
Alzheimer ' s Australia, Decision Making in Advance: Reducing Barriers and Improving Access to Advance Directives for People with Dementia, Discussion Paper No 8 (2006)
Alzheimer' s Australia NSW, Advance Health Care Directives, Position Statement (2008)
Clinical, Technical and Ethical Principal Committee, The Australian Health Ministers ' Advisory Council, A National Framework For Advance Care Directives (20 1 0)
Department of Justice and Community Safety, Australian Capital Territory, Substitute Decision-Making: Review of the Powers of Attorney Act 1 956, I ssues Paper (2004)
House of Representatives Standing Cormnittee on Legal and Constitutional Affairs, Parliament of Australia, Older People and the Law (2007)
Irish Council for Bioethics, Is it Time for Advance Healthcare Directives?, Opinion (2007)
Kerridge, I et al, Advance Directives (Issues Paper 5 , The Australian Institute of Health Law and Ethics, 1 997)
290
Law Commission, Mental Incapacity, Report No 23 1 ( 1 995)
Law Commission, Mentally Incapacitated and Other Vulnerable Adults: Public Law Protection, Consultation Paper No 1 3 0 ( 1 993)
Law Commission, Mentally Incapacitated Adults and Decision-Making: Medical Treatment and Research, Consultation Paper No 129 ( 1 993)
Law Commission, Mentally Incapacitated Adults and Decision-Making: A New Jurisdiction, Consultation Paper No 1 28 ( 1 993)
Law C01runission, Mentally Incapacitated Adults and Decision-Making: An Overview, Consultation Paper No 1 1 9 ( 1 99 1 )
Law Commission, Decision-Making and Incapacity: A Discussion Document ( 1 989)
Law Reform Commission of lreland, Bioethics: Advance Care Directives, Report No 94 (2009)
Law Reform Commission of Ireland, Bioethics: Advance Care Directives, Consultation Paper (2008)
National Health and Hospitals Reform C01mnission, A Healthier Future for all Australians, Final Report (2009)
Northern Territory Law Reform Committee, Report of the Powers of Attorney Act and Medical Enduring Powers of Attorney, Report No 3 3 (2009)
Parliament of Victoria, Social Development Committee, Final Report upon the Inquiry into Options for Dying with Dignity ( 1 987)
President 's Council on Bioethics, Taking Care: Ethical Caregiving in our Aging Society (2005)
Queensland Law Reform Commission, A Review of Queensland's Guardianship Laws Discussion Paper, Working Paper No 68 (2009)
Queensland Law Reform Commission, Assisted and Substituted Decisions: DecisionMaking by and for People with a Decision-Making Disability, Report No 49 ( 1 996)
Stewart, C, Public Interests and the Right to Die: Compelling Reasons for Overriding the Right to Self-Determination (Issues Paper 1 4, The Australian Institute of Health Law and Ethics, 2000)
Street, A and G Ottmann, State of the Science Review of Advance Care Planning Models (Latrobe University, 2006)
291
Western Australian Govermnent, Medical Treatment for the Dying, Discussion Paper (2005)
Western Australian Law Reform Commission, Medical Treatment for the Dying, Report No 84 ( 1 99 1 )
White, B and L Willmott, Rethinking Life-Sustaining Measures: Questions for Queensland (2005) Queensland University of Technology <http ://eprints.qut.edu.au/7093/> at 27 September 20 1 0
CASES
A v Hoare [2008] 1 AC 844
Airedale NHS Trust v Bland [ 1 993] AC 789
Auckland Area Health Board v Attorney-General [ 1 993] 1 NZLR 235
Australian Capital Territory v JT [2009] ACTSC 1 05
B v Responsible Medical Officer, Broadmoor Hospital [2005] EWHC 1 936
BAH [2007] NSWGT 1 (Unreported, Robinson P , Kurrie and Circuitt, 5 February 2007)
Boyse v Rossborough ( 1 857) 1 0 ER 1 1 92
Brightwater Care Group (!ne) v Rossiter [2009] W ASC 229
B WV v Gardner (2003) 7 VR 487
Cole v Turner ( 1 704) 6 Mod 1 49
Collins v Wilcock [ 1 984] 1 WLR 1 1 72
Cruzan v Director, Missouri Department ofHealth 497 US 26 1 ( 1 990)
Department of Community Services v Y [ 1 999] NSWSC 644
F v R ( 1 983) 33 SASR 1 89
FI v Public Guardian [2008] NSW ADT 263
Firmin v A ttorney-General [2007] NZHC 50
Fitzpatrick v K [2008] IEHC 1 04
292
Gillick v West Norfolk and Wisbech Area Health Authority [ 1 986] AC 1 1 2
Glossop Acute Services Trust v CH [ 1 996] 1 FLR 762
HE v A Hospital NHS Trust [2003] 2 FLR 408
H Ltd v J [201 0] SASC 1 76
Hunter and New England Area Health Service v A (2009) 74 NSWLR 88
In AB (Application for Consent to Medical Treatment) [2004] 2004/1 867
(Unreported, New South Wales Guardianship Tribunal, 6 April 2004)
In re Guardianship of Schiavo, 780 So 2d 1 76 (Fla 2nd DCA 200 1 )
In re Storar 5 2 NY 2d 3 63
Isaac Messiha (By his Tutor Magdy Messiha) v South East Health [2004] N SWSC 1 06 1
Korp (Guardianship) [2005] VCAT 779
KR v Bryn Alyn Community (Holdings) Ltd [2003] QB 1 44 1
Kracke v Mental Health Review Board [2009] VCAT 646
Malette v Shulman ( 1 990) 67 DLR (4th) 3 2 1
Messiha v South East Health [2004] NSWSC 1 06 1
Nancy B v Hotel-Dieu de Quebec ( 1 992) 8 6 DLR (4th) 385
NHS Trust v T (Adult Patient: Refusal of Medical Treatment) [2005] 1 All ER 3 87
Norfolk and Norwich Healthcare (NHS) Trust v W [ 1 996] 2 FLR 6 1 3
Northridge v Central Sydney Area Health Service (2000) 5 0 NSWLR 549
Pretty v United Kingdom (2002) 3 5 EHRR 1
Qumsieh 's Case (Unreported decision, Guardianship and Administration Board, L Pilgrim, 24 February 1 998)
Qumsieh v Guardianship and Administration Board & Anor [ 1 998] VSCA 45
Qumsieh v Pilgrim (Unreported, High Court or Australia, McHugh and Callinan JJ, 1 1 February 2000)
293
Re AK (Medical Treatment: Consent) [200 1 ] FLR 1 29
Re Alex: Hormonal Treatment for Gender Identity Dysphoria [2004] FamCA 297
Re B (Adult: Refusal of Medical Treatment) [2002] 2 All ER 449
R (Burke) v General Medical Council [2005] QB 424
R (On the Application of AN) v The Mental Health Review Tribunal (Northern Region) [2006] QB 468
R (On the Application of Burke) v The General Medical Council [2006] QB 273
R (On the Application of Purdy) v Director of Public Prosecutions [2009] 3 WLR 403
R (Pretty) v Director of Public Prosecutions (Secretary of State for the Home Department Intervening), [2002] 1 AC 800
Re C (Adult: Refusal of Medical Treatment) [ 1 994] 1 All ER 8 1 9
Re E (A Minor) [ 1 993] 1 FLR 386
Re F [ 1 990] 2 AC 1
Re G [ 1 997] 2 NZLR 201
Re HG [2006] QGAAT 26
Re K, W and H (Minors) (Consent to Treatment) [ 1 993] 1 FCR 240
Re L (Medical Treatment: Gillick Competency) [ 1 998] 2 FLR 8 1 0
Re L (Patient: Non-Consensual Treatment) [ 1 997] 2 FLR 837
Re M (Medical Treatment: Consent) [ 1 999] 2 FLR 1 097
Re ME (Medical Treatment) [ 1 997] 2 FCR 54 1
Re MC [2003 ] QGAAT 1 3
Re R (A Minor) (Wardship: Consent to Treatment) [ 1 992] Fam 1 1
Re R WG [2000] QGAA T 2
Re S (Adult: Refusal of Medical Treatment) [ 1 992] 4 All ER 67 1
Re S (A Minor) (Consent to Medical Treatment) [ 1 994] 2 FLR 1 065
294
Re TM [2002] QGAA T 1
Re T (Adult: Refusal a/Treatment) [ 1 992] 4 All ER 649
Re W (A Minor) (Medical Treatment) [ 1 992] 4 All ER 627
Rochdale Healthcare (NHS) Trust v C [ 1 997] 1 FCR 274
Rogers v Whitaker ( 1 992) 1 75 CLR 479
Royal Alexandra Hospital v Joseph [2005] NSWSC 422
Schloendorffv Society ofNew York Hospital ( 1 9 1 4) 2 1 1 NY 1 25
Secretary, Department of Health and Community Services (NT) v JWB ( 1 992) 1 75 CLR 2 1 8
Short/and v North/and Health Limited [ 1 998] 1 NZLR 433
St George 's Healthcare NHS Trust v S; R v Col! ins, ex parte S [ 1 998] 3 All ER 673
State of Qld v As till (Unreported decision, Supreme Court of Queensland, Muir J, 1 8 January 2006)
State of Queensland v D [2004] 1 QdR 426
Stuart v Kirkland- Veenstra (2009) 23 7 CLR 2 1 5
Stubbings v Webb [ 1 993] AC 498
Superintendent of Belchertown State School v Saikewicz 3 73 Mass 728
The Queen (On the Application of DJ) v The Mental Health Review Tribunal [2005] EWHC 587
Vacco (Attorney-General of New York) v Quill, 521 US 793 ( 1 997)
W Healthcare NHS Trust v H [2005] 1 WLR 834
Werth v Taylor 475 NW 2d 426 ( 1 99 1 )
White v Connolly [ 1 927] St R Qd 7 5
Winter v Crichton ( 1 99 1 ) 23 NSWLR 1 1 6
WK v Public Guardian (No 2) [2006] NSWADT 1 2 1
295
LEGISLATION
Acts Amendment (Consent to Medical Treatment) Act 2006 (W A)
Adult Guardianship Act 1988 (NT)
Charter of Human Rights and Responsibilities 2006 (Vie)
Consent to Medical Treatment and Palliative Care Act 1995 (SA)
Criminal Code 1899 (Qld)
Guardianship Act 1987 (NSW)
Guardianship and Administration Act 2000 (Qld)
Guardianship and Administration Act 1995 (Tas)
Guardianship and Administration Act 1993 (SA)
Guardianship and Administration Act 1990 (W A)
Guardianship and Administration Act 1 986 (Vie)
Guardianship and Management of Property Act 1991 (ACT)
Human Rights Act 2004 (ACT)
Human Rights Act 1998 (UK)
Medical Treatment Act 1994 (ACT)
Medical Treatment Act 1988 (Vie)
Medical Treatment (Health Directions) Act 2006 (ACT)
Mental Capacity Act 2005 (UK)
Minors (Property and Contracts) Act 1970 (NSW)
Natural Death Act 1988 (NT)
Natural Death Act 1983 (SA)
New Zealand Bill of Rights Act 1990 (NZ)
Powers of A ttorney Act 1998 (Qld)
296
DELEGATED LEGISLATION
Consent to Medical Treatment and Palliative Care Regulations 2004 (SA)
Natural Death Regulations 1989 (NT)
BILLS
Acts Amendment (Advance Care Planning) Bill 2006 (W A)
Directions for Medical Treatment Bil l 2005 (Tas)
EXPLANATORY NOTES
Explanatory Notes, Powers of Attorney Bill 1 997 (Qld) 1
PARLIAMENTARY DEBATES
ACT, Parliamentary Debates, Legislative Assembly, 1 4 September 1 994, 2874 (Ten-y Cmmolly)
Northern Territory, Parliamentary Debates, Legislative Assembly, 1 7 August 1 998, 3537 , 3538 (Daryl Manzie)
Queensland, Parliamentary Debates, Legislative Assembly, 1 2 May 1 998, 1 025 (Denver Beanland)
Queensland, Parliamentary Debates, Legislative Assembly, 1 2 May 1 998, 1 025 (Liz Cunningham)
Queensland, Parliamentary Debates, Legislative Assembly, 8 October 1 987, 3687 (Denver Beanland)
South Australia, Parliamentary Debates, House of Assembly, 3 November 1 994,
989, 990 (Stephen Baker)
South Australia, Parliamentary Debates, Legislative Council, 5 August 1 993 , 60 (Barbara Wiese)
South Australia, Parliamentary Debates, Legislative Council, 5 August 1 993 , 60 (Christopher Sunmer).
297
Tasmania, Parliamentary Debates, Legislative Council, 1 September 2005, 1 6-22
(Mrs Norma Jamieson)
Victoria, Parliamentary Debates, Legislative Assembly, 5 May 1 988 , 2 1 66-8 (Andrew McCutcheon)
Victoria, Parliamentary Debates, Legislative Assembly, 5 May 1 988 , 2 1 67 (Andrew McCutcheon)
Victoria, Parliamentwy Debates, Legislative Assembly, 5 May 1 988 , 2 1 66 (Andrew McCutcheon)
Victoria, Parliamentary Debates, Legislative Council, 23 March 1 988 , 333-4, 335
(Evan Walker)
Victoria, Parliamentary Debates, Legislative Council, 23 March 1 988 , 333 (Evan Walker)
Western Australia, Parliamentary Debates, Legislative Council, 6 December 2006, 9244b (Sue Ellery)
Western Australia, Parliamentary Debates, Legislative Assembly, 2 1 June 2006, 406 1 b (Jim McGinty)
TREATIES, CONVENTIONS AND DECLARATIONS
Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine 199 7, ETS No 1 64, opened for signature 4 April 1 997, (entered into force 1 December 1 999)
European Convention on Human Rights 1998, opened for signature 4 November 1 950, 2 1 3 UNTS 221 (entered into force 3 September 1 953)
International Covenant on Civil and Political Rights 1966, opened for signature 1 6 December 1 966, 999 UNTS 1 7 1 (entered into force 23 March 1 97 6)
Universal Declaration of Human Rights 1948, opened for signature 1 0 December 1 948, UN Doe A/8 1 0 at 7 1 (entered into force 1 0 December 1 948)
Universal Declaration on Bioethics and Human Rights, opened for signature 1 January 2005 (entered into force 1 9 October 2005)
298
GUIDANCE
Australian Medical Association, The Role of the Medical Practitioner in End of L�fe Care (2007)
Australian Medical Association, The Role of the Medical Practitioner in Advance Care Planning (2006)
Australian Medical Council, Good Medical Practice: A Code of Conduct for Doctors in A ustralia (2009)
British Medical Association, Withholding or Withdrawing Life-Prolonging Treatment: Guidance for Decision Making (200 1 )
National Health and Medical Research Council, Ethical Guidelines for the Care of People in Post-Coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008)
New South Wales Department of Health, Guidelines for End of Life Care and Decision-Making (2005)
New South Wales Department ofHealth, Using Advance Care Directives (2004)
Office of Public Advocate, Practice Guidelines: Not for Resuscitation (2004) <http ://www.publicadvocate.vic.gov.au/about-us/200/> at 27 September 201 0
OTHER SOURCES
Blackstone, W, Commentaries on the Laws of England (Professional Books, 1 5th ed, 1 83 0)
Butterworths, Halsbury 's Laws of Australia, vol 1 8 (at 9 September 2009) 280
Medicine, ' 6 Consent ' [280-3025] .
Government of Western Australia, Department of Health, Advance Health Directives <http://www.health.wa.gov.au/advancehealthdirective/consumers/ahd form.cfin> at 27 September 201 0
Queensland Government, Advance Care Planning <http://www.health .gld.gov.au/advance
care-planning/> at 27 September 20 1 0
Victorian Law Reform Commission, Guardianship <http:/ /www. la wreform. vie. go v. au/wps/wcm/ connect!iustlib/Law+ Reform/Ha me/Cu rrent+Projects/Guardianship/> at 27 September 201 0
299
