REPORT
 
 
BIOETHICS:
ADVANCE CARE
DIRECTIVES
 
 
 
 
(LRC 94 - 2009)
 
 
REPORT
 
BIOETHICS:
ADVANCE CARE
DIRECTIVES
(LRC 94 - 2009)
 
© COPYRIGHT
Law Reform Commission
 
FIRST PUBLISHED
September 2009
 
ISSN 1393-3132
 
LAW REFORM COMMISSION"S ROLE
 
 
The Law Reform Commission is an independent statutory body established by
the Law Reform Commission Act 1975. The Commission"s principal role is to
keep the law under review and to make proposals for reform, in particular by
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                                      ii
 
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The Commissioners at present are:
 
        President:
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        Part-time Commissioner:
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        Part-time Commissioner:
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                                      iii
 
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      Jane O-Grady BCL, LLB (NUI ), LPC (College of Law)
      Gerard Sadlier BCL (NUI)
      Joseph Spooner, BCL (Law with French Law) (NUI), Dip. French and
      European Law (Paris II), BCL (Oxon)
      Ciara Staunton BCL, LLM (NUI), Diop sa Gh (NUI)
 
 
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LEGISLATION DIRECTORY
 
 
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      Heather Mahon LLB (ling. Ger.), M.Litt, Barrister-at-Law
 
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                                  iv
 
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PRINCIPAL LEGAL RESEARCHER FOR THIS REPORT
 
 
      Ciara Staunton BCL, LLM (NUI), Dip sa Gh
 
 
 
 
                                v
 
CONTACT DETAILS
 
 
Further information can be obtained from:
 
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                                    vi
 
ACKNOWLEDGEMENTS
 
 
The Commission would like to thank the following people who provided valuable
assistance:
 
Dr Anna Clarke, Irish Medical Council
Eugene Donoghue, An Bord Altranais
Dr Katherine Froggatt, Senior Lecturer, Institute for Health Research,
Lancester University
Mr William Kennedy, Irish Medical Council
Dr Mary Keys, Lecturer, School of Law, NUI Galway
Mr Edo Korljan, Secretary, Committee of Experts on Family Law (CJ-FA),
Council of Europe
Dr Deirdre Madden, Lecturer, School of Law, University College Cork
Prof Kieran Murphy, Irish Medical Council
Mr Eugene Murray, Irish Hospice Foundation
Dr Doiminic Ó Brannagáin, Consultant Physician in Palliative Medicine
Dr Des O"Neill, Consultant Geriatrician, Tallaght Hospital
Mr Mervyn Taylor, Irish Hospice Foundation
Ms Ann Marie Ryan, An Bord Altranais
Prof David Smith, Irish Council for Bioethics
Ms Kathleen Walsh, An Bord Altranais
 
Full responsibility for this publication lies, however, with the Commission.
 
 
 
 
                                      vii
 
TABLE OF CONTENTS
 
 
Table of Legislation                                                           xi
 
Table of Cases                                                                xiii
INTRODUCTION                                                                    1
                 A     Background to the Report                                 1
                 B     Terminology                                              2
                 C     Outline of this Report                                   3
CHAPTER 1              ORIGINS OF ADVANCE CARE DIRECTIVES,
                       SCOPE OF REPORT AND GENERAL PRINCIPLES 7
                 A     Introduction                                             7
                 B     Emergence of advance care directives                     7
                       (1) Advances in health care, informed decision
                            making and reform of the law on mental capacity    8
                       (2) Examples of advance care directives                10
                 C     The development of the law on advance care
                       directives                                             11
                       (1) Developments in the United States                  12
                       (2) Developments in the UK                             14
                       (3) Developments in the Council of Europe              17
                       (4) Legislation in Council of Europe Member States     20
                       (5) The development of advance care directives in
                            Ireland                                           21
                       (6) Conclusions on the need for a legislative
                            framework                                         28
                       (7) The legislative framework in a wider health care
                            setting                                           29
                 D     Scope of the Report                                    31
                       (1) Advance care directives and the law on
                            euthanasia and assisted suicide                   32
                       (2) Treatment requests and treatment refusals          33
                       (3) Advance care directives and mental health care     35
                 E     Underlying Rights and Principles                       36
                       (1) The right to consent to, and to refuse, medical
                            treatment                                         36
                       (2) Autonomy, dignity and privacy                      39
                       (3) Presumption in favour of preserving life in the
                            interpretation of advance care directives         41
 
 
 
                                      viii
 
CHAPTER 2       ADVANCE CARE DIRECTIVES, HEALTH CARE
                PROXIES AND OTHER THIRD PARTIES                         43
            A   Introduction                                            43
            B   Personal Guardians and Third Party Informal
                Decision Making                                         43
                (1) The role of personal guardians                      44
                (2) The role of third parties in informal
                     decision-making                                    45
            C   Enduring Powers of Attorney                             46
                (1) Powers under an EPA                                 47
                (2) Life-sustaining treatment                           48
                (3) Conflict between EPAs and advance care
                     directives                                         50
            D   Advance care directives and a health care proxy         51
CHAPTER 3       THE DETAILED LEGISLATIVE FRAMEWORK
                FOR ADVANCE CARE DIRECTIVES                             55
            A   Introduction                                            55
            B   Healthcare professional                                 55
            C   Various health care situations and advance care
                directives                                              56
                (1) Basic Care                                          57
                (2) Palliative Care                                     58
                (3) Artificial Life-sustaining treatment                59
            D   Detailed requirements for an advance care
                directive to be enforceable                             65
                (1) Unwritten and written advance care directives       66
                (2) Witnesses                                           70
                (3) Age                                                 72
                (4) Capacity                                            73
                (5) Informed decision making                            74
                (6) Specific requirements for the validity of an
                     advance care directive                             76
                (7) The applicability of an advance care directive to
                     specific treatment                                 78
                (8) Revocation                                          82
                (9) Review                                              82
                (10)A register of advance care directives               83
            E   Detailed issues concerning the healthcare proxy         85
                (2) Unwritten and written advance care directives       87
                (3) Discussion between maker and proxy                  88
                (4) Relationship                                        88
            F   Code of Practice                                        89
 
                                ix
 
CHAPTER 4       CONSEQUENCES OF ESTABLISHING A
                STATUTORY FRAMEWORK                                     91
            A   Introduction                                            91
            B   Implications for following an advance care directive    91
            C   Disregarding an advance care directive                  92
                (1) Current law                                         92
                (2) Proposed statutory framework                        94
                (3) Conclusion                                          97
            D   Consequences for failing to follow an advance care
                directive                                               97
                (1) Health Act 2004                                     98
                (2) Professional Misconduct                             98
CHAPTER 5       SUMMARY OF RECOMMENDATIONS                             101
APPENDIX        DRAFT MENTAL CAPACITY
                (ADVANCE CARE DIRECTIVES) BILL 2009                    111
 
 
 
 
                                x
 
TABLE OF LEGISLATION
 
 
Act on the Status and Rights of Patients 1992    785/1992         Fin
 
Advance Medical Directive Act 1996               No. 16 of 1996   Sing
 
Health Act 2004                                  No. 42 of 2004   Irl
 
Health and Social Care Professionals Act 2005    No. 27 of 2005   Irl
 
Lunacy Regulation (Ireland) Act 1871             1871, c. 22      Irl
 
Medical Practitioners Act 2007                   No. 25 of 2007   Irl
 
Mental Capacity Act 2005                         2005, c.9        Eng
 
Non-Fatal Offences Against the Person Act 1997   No. 26 of 1997   Irl
 
Nurses Act 1985                                  No. 18 of 1985   Irl
 
Powers of Attorney Act 1996                      No. 12 of 1996   Irl
 
Powers of Attorney Act 1998 (Qld)                1998             Aus
 
Succession Act 1965                              No. 27 of 1965   Irl
 
 
 
 
                                        xi
 
 
TABLE OF CASES
 
 
Airedale NHS Trust v Bland        [1993] 1 All ER 821 Eng Allore v Flower Hospital          (1997) 699 NE 2d 560                   US
 
Re MB (medical treatment)         [1997] 2 FLR 757                       Eng
 
Re C (adult: refusal of           [1994] 1 WLR 290                       Eng
treatment)
 
Cruzan v Director Missouri        (1990) 497 US 261                      US
Department of Health
 
HE v A Hospital NHS Trust         [2003] 2 FLR 408                       Eng
 
Fitzpatrick v FK                  [2006] IEHC 392, [2008] 1 ILRM 68 Irl Fitzpatrick v FK (No 2)           [2008] IEHC 104 Irl Re AK (medical treatment:         [2001] 1 FLR 129                       Eng
consent)
 
O'Laoire v Medical Council        High Court (Keane J) 27 January 1995   Irl
 
Re Quinlan                        (1976) 355 A2d 647                     US
 
Re T (adult: refusal of medical   [1996] 4 All ER 649                    Eng
treatment)
 
In re a Ward of Court (No 2)      [1996] 2 IR 79                         Irl
 
In re a Ward of Court (No 1)      [1996] 2 IR 73 Irl
 
 
 
 
                                       xiii
 
INTRODUCTION
 
 
A         Background to the Report
 
 


1.         This Report forms part of the Commission"s Third Programme of Law
Reform 2008-2014,1 and involves an examination of whether a legislative
framework should be put in place for advance care directives. The Report
follows the publication in 2008 of the Commission"s Consultation Paper on
Advance Care Directives,2 which contained provisional recommendations on the
subject. In the Commission"s 2006 Report on Vulnerable Adults and the Law 3
the issue of advance care directives had been briefly discussed in the wider
context of reform of the law on mental capacity, but the Commission indicated
that it deserved separate treatment and analysis. Thus, the proposals on
advance care directives in this Report involve an important aspect of the
interaction between law and bioethics and also form an element of the proposed
reform of the law on mental capacity. 4 As the Government"s Scheme of a
Mental Capacity Bill 2008 largely proposes to implement the recommendations
in the Commission"s 2006 Report, the Scheme of the 2008 Bill is referred to in
some detail in this Report.


2.        The Commission"s 2008 Consultation Paper was published to
coincide with the Commission"s Annual Stakeholder Conference, held on 14
October 2008. The Conference heard from a variety of speakers on the issues
raised by the Consultation Paper and the wider health care setting in which
advance care directives should be considered.5 The Conference delegates
 
 
1
      Report on the Third Programme of Law Reform 2008-2014 (LRC 86-2007),
      Project 30.
2
      Consultation Paper on Bioethics: Advance Care Directives (LRC CP 51-2008),
      available at www.lawreform.ie. This is referred to as the Consultation Paper in the
      remainder of this Report.
3
      LRC 82-2006. The 2006 Report was prepared under the Commission"s Second
      Programme of Law Reform 2000-2007
4
      See paragraphs 1.07-1.09, below.
5
      The Conference speakers included: Dr Katherine Froggatt (Institute of Health
      Research, Lancaster University, England), Dr Mary Keys (School of Law, NUI
      Galway), Dr Doiminic Ó Brannagáin (Consultant Physician in Palliative Medicine),
      Prof David Smith (Irish Council for Bioethics) and Mr Mervyn Taylor (Hospice
      Friendly Hospitals). The Conference was opened by Máire Hoctor, TD, Minister of
      State, Department of Health and Children. The Conference was chaired by the
 
                                         1
 
contributed valuable insights into the legal, ethical and practical issues that
arise in this area, and the Commission is extremely grateful to them for their
assistance in this respect.


3.         Since the publication of the Consultation Paper, the Commission
received many detailed submissions on its content and these have informed the
Commission"s analysis in preparing this Report. The Commission also held a
series of additional consultative meetings with relevant organisations and
individuals in the first half of 2009. This Report sets out the Commission"s final
recommendations on advance care directives, together with a draft Mental
Capacity (Advance Care Directives) Bill intended to implement those
recommendations.
 
 
B         Terminology


4.          In the Consultation Paper and in this Report, the Commission has
used the term -advance care directive- to describe the advance expression of
wishes by a person, at a time when they have the capacity to express their
wishes, about certain treatment that might arise at a future time when they no
longer have capacity to express their wishes (because, for example, of the
effects of Alzheimer"s disease, coma or stroke). A brief explanation of this is
appropriate.6 The Commission is aware that there is no single, universal, term in
use to describe this advance expression of wishes. Thus, the term -living will-
was used in the United States in the late 1960s when they were first
popularised. Since then, a number of terms have been used, such as -advance
decision-, -advance directive,- -advance care directive,- -advance healthcare
directive,- -instruction directive,- -advance treatment directive- and -advance
statement.-7


5.         In preparing this Report, the Commission has considered the
appropriate term to be used in this respect. The term -living will- is likely to be
thought of as a formal, written, document and as the Commission considers that
this would be unduly restrictive in terms of scope, it would not be a suitable term
to use. In Europe, it appears that the term -advance directive- is quite often
 
 
 
 
      Commission President, and Commissioner Patricia Rickard-Clarke delivered a
      presentation setting out the main elements of the Consultation Paper.
6
      See also the Consultation Paper, paragraphs 1.12-1.18.
7
      See Irish Council for Bioethics Is It Time for Advanced Healthcare Directives?
      (2007), at1, available at www.bioethics.ie.
 
 
                                       2
 
used,8 and the Commission has therefore concluded that this would, in general,
be a suitable expression. The Commission notes that the word -directive- can
denote a legally enforceable statement, though allowing some degree of
flexibility as to how it is implemented. 9 The Commission accepts that the word
-directive- may appear somewhat formal (as opposed to, for example,
-statement-) but has concluded that it has the benefit of indicating an element of
enforceability while at the same time indicating a degree of flexibility.


6.         The Commission has also concluded that the term -advance
directive- might not fully express the health care context within which the
expression of wishes arises. For that reason, the Commission has concluded
that some reference to the health care setting should be incorporated into the
term to be used. While the term -advance healthcare directive- has some
attractions in this respect, the Commission considers that, having regard to the
wider care setting within which the expression of wishes may arise, such as a
hospice care context, the term -advance care directive- appears to be the most
suitable term to use. For these reasons, the Commission uses that terms in this
Report and also recommends that it be used in the context of any legislative
framework involving the advance expression of wishes of an individual in a
health care or wider care setting.


7.        The Commission recommends that the term "advance care directive"
be used in any legislative framework that deals with the advance expression of
wishes of an individual in a health care or wider care setting.
 
 
C         Outline of this Report


8.        The Commission now turns to outline the main elements of this
Report and its recommendations for reform.


1.01       In Chapter 1, the Commission describes the origins and emergence
of advance care directives, in the context of advances in health care and the
move towards informed decision making. The Commission places this in the
wider setting of reform of the law on mental capacity, notably through the
Government"s Scheme of a Mental Capacity Bill 2008. The Commission also
gives some examples of advance care directives to emphasise that they are not
confined to the end-of-life setting. The Commission discusses the emergence of
 
8
      See, for example, the Council of Europe"s 2009 Draft Recommendation on
      Principles Concerning Continuing Powers of Attorney and Advance Directives for
      Incapacity, discussed in Chapter 1, below.
9
      Thus, Article 249 of the EC Treaty states that an EU Directive -shall be binding,
      as to the result to be achieved, upon each Member State to which it is addressed,
      but shall leave to the national authorities the choice of form and methods.-
 
 
                                        3
 
advance care directives in the United States and the United Kingdom and the
growing emergence of relevant international instruments, in particular from the
Council of Europe.


9.         The Commission also discusses the emergence of the debate on
advance care directives in Ireland, including relevant case law and the
important work of bodies such as the Irish Council for Bioethics and the Irish
Hospice Foundation. The Commission concludes by recommending the
introduction of a legislative framework for advance care directives. In this
respect, the Commission notes that its recommendations are based on the clear
view that the proposed legislative framework is intended to be facilitative, and is
aimed at encouraging the use of advance care directives in the wider context of
health care planning.


10.        The Commission emphasises that its proposals do not affect any
action that is currently prohibited by the criminal law, and that they are
applicable to refusals of medical treatment and do not extend to treatment
requests. The Chapter also sets out the general rights and principles that form
the basis for the Commission"s detailed proposals in this Report.


11.       In Chapter 2, the Commission discusses how third parties, often
called health care proxies, may be involved in the decision-making process on
which a person has expressed his or her wishes in the advance care directive.
The Commission also discusses the relationship between the role of the health
care proxy and that of two other separate but related third parties: the personal
guardian envisaged in the Government"s Scheme of a Mental Capacity Bill
2008; and an attorney appointed under the Powers of Attorney Act 1996.


12.         In Chapter 3, the Commission discusses the main elements of the
Commission"s proposed legislative framework, including how it would deal with
issues such as basic care and life-sustaining treatment. The Commission also
sets out the detailed requirements to be in place for an advance care directive
to be enforceable, notably whether the advance care directive has been validly
made and is applicable to the treatment that is to be given or continued. The
Commission concludes by discussing the scope of a proposed statutory Code
of Practice on Advance Care Directives that would support the proposed
legislative framework.


13.       In Chapter 4, the Commission discusses the legal effect of the
proposed legislative framework. The Commission refers to the general law on
civil and criminal liability that will remain unaffected by its proposals. The
Commission then discusses the protections that should be in place for those
who follow and implement a valid advance care directive, and what should be
the legal position where an advance care directive is not followed. The
conclusions reached are predicated on the Commission"s clear view that the
proposed legislative framework is intended to facilitate and encourage the use
 
                                      4
 
of advance care directives, while also ensuring that they are followed and
implemented to the greatest extent possible.


14.       Chapter 5 is a summary of the recommendations in the Report.


15.        The Appendix to the Report contains a draft Mental Capacity
(Advance Care Directives) Bill 2009, intended to give effect to the Commission"s
detailed recommendations for a legislative framework.
 
 
 
 
                                     5
 
 
CHAPTER 1            ORIGINS OF ADVANCE CARE DIRECTIVES,
                     SCOPE OF REPORT AND GENERAL PRINCIPLES
 
 
 
 
A         Introduction


1.02        In this chapter the Commission describes the origins of advance care
directives, the wider setting of the law on mental capacity within which they
arise and the general principles that have informed the Commission"s approach
to this area. In Part B, the Commission discusses the emergence of advance
care directives in the context of advances in health care and the move towards
informed decision making. The Commission places this in the wider setting of
reform of the law on mental capacity envisaged in the Government"s Scheme of
a Mental Capacity Bill 2008. The Commission also provides some examples of
advance care directives to emphasise that they are not confined to the end-of-
life setting. In Part C, the Commission discusses the emergence of advance
care directives in the United States and the United Kingdom, largely associated
with a number of high-profile court cases involving end-of-life treatment. The
growing emergence of relevant international instruments, in particular from the
Council of Europe, is also discussed.


1.03       The Commission then discusses the emergence of the debate on
advance care directives in Ireland, including relevant case law and the
important work of bodies such as the Irish Council for Bioethics and the Irish
Hospice Foundation. The Commission concludes by recommending the
introduction of a legislative framework for advance care directives. Part D
discusses the scope of this Report, in particular that its focus is on refusals of
medical treatment. This Part also points out that the Commission"s proposals do
not affect any action that is currently prohibited by the criminal law. Part E sets
out the general rights and principles that form the basis for the Commission"s
detailed proposals, derived from the discussion in Part C.
 
 
B         Emergence of advance care directives


1.04       In this Part, the Commission discusses the emergence of advance
care directives. This begins with a discussion of advances in health care and
medical treatment and the movement from paternalism in medicine towards a
 
                                      7
 
social model involving informed decision making. The Commission also
discusses the connection between advance care directives and the wider
setting of reform of the law on mental capacity, notably through the
Government"s Scheme of a Mental Capacity Bill 2008, which derives from the
Commission"s 2006 Report on Vulnerable Adults and the Law. The Commission
concludes this Part with some examples of advance care directives.
(1)       Advances in health care, informed decision making and reform
          of the law on mental capacity


1.05      The extensive discussion nationally and internationally about
advance care directives has arisen against the background of two major
developments in health care and treatment, namely, advances in technology
and a movement towards the view that patients have the right to make informed
decisions about their treatment.


1.06       Regarding the first development, the great advances in medical
                                                                th
treatment and technology from the second half of the 20 Century to the
present have meant that, in developed countries, people live longer, including
those with a serious illness or disease. These advances have also meant that
life can be sustained in situations where, previously, nature would have -taken
its course- and a person would have died. There is no questioning the positive
benefits that these developments have brought, and that future developments
may bring cures for illnesses and diseases that are currently terminal. At the
same time, developments has made death and dying more complicated. In
some instances these developments have led some to fear that they may not be
given relevant treatment or, conversely, may be kept alive indefinitely by life-
prolonging treatment after they have lost their ability (their mental capacity) to
decide on their treatment options and to make their own views known. 1


1.07          The need for advance decision-making initially arose, therefore,
because of the complex legal and ethical difficulties that arise where, for
example, it is being decided whether to withhold or withdraw artificial nutrition
and hydration (ANH) from a particular person who is unconscious or in a coma,
in the absence of a clear advance indication about his or her wishes on the
matter. In the case of withholding ANH, health care professionals and others -
often family members - have to act as substitute decision makers about whether
the individual would have wished to have their life sustained, and if so for how
long, or would have wished not to be resuscitated. Equally, in the case of
withdrawal of ANH, the health care professionals and family members who act
as substitute decision makers are faced with deciding whether continuing with
artificial intervention is appropriate.
 
1
      Morgan Capron -Advance Directives- in Kulise and Sige (eds) A Companion to
      Bioethics (1998) at 262.
 
 
                                      8
 


1.08        The second major development in health care treatment in recent
decades has involved the movement towards the view that patients have the
right to make informed decisions about their treatment. This involves a
significant shift from a paternalistic approach that decisions about health care
options and treatment were primarily for health care professionals towards the
view that the patient must be actively engaged in a process that leads to
informed decision making about care and treatment options. The Commission
has previously supported this important development in its Report on
Vulnerable Adults and the Law, 2 and contained the Scheme of a Mental
Capacity Bill that included a general presumption of capacity and a requirement
that the assessment of capacity should be based on a functional approach, that
is, whether the person understands the decision being considered, including
health care decisions, at the time it is being made.


1.09       The Commission also recommended that the current Wards of Court
system, administered primarily under the Lunacy Regulation (Ireland) Act 1871
should be replaced because it is based on the paternalistic approach to
capacity and involves the complete removal of decision-making capacity from
an individual and the operation of an extreme substitute decision making
process under the control of the High Court. The Commission recommended
that a new form of decision making process, involving an appointed Personal
Guardian to be supervised by a standard-setting Office of Public Guardian,
should be put in place. The Personal Guardian would act as an assisting
decision maker in conjunction with the individual involved where this remained
possible, and would only become a substitute decision maker where it is clear
that the individual no longer has any functional capacity. This graduated
approach to the assessment of capacity-loss, and the involvement in decision
making of a third party Personal Guardian or proxy, is consistent with the
maximisation of informed decision making.


1.10      The Commission very much welcomes that this approach has been
incorporated into the Government"s Scheme of a Mental Capacity Bill 2008
which was published in September 2008. 3 The enactment of such legislation
would also fulfil the State"s general international obligations under, for example,
 
 
 
 
2
      LRC 83-2006.
3
      Available at www.justice.ie
 
 
                                      9
 
the 2006 UN Convention on the Rights of Persons with Disabilities4 and relevant
Council of Europe standards.5


1.11       The Commission"s 2006 Report on Vulnerable Adults and the Law is
predicated on the view that the presumption of capacity, and the functional
assessment of capacity, is required to support informed decision making. The
Commission also acknowledged that the specific issue of how this approach
would apply in the context of advance care directives needed further
consideration. The Commission noted that, at that time, the Irish Council for
Bioethics had begun work on this area and that it would be appropriate to
postpone further analysis in that light.6 As discussed in Part C below, the
Council published an Opinion on this matter in 2007 and the Commission also
received submissions during 2007 indicating that this was an area suitable for
inclusion in the Commission"s Third Programme of Law Reform 2008-2014. As
is apparent from the detailed discussion in Part C, below, it is important to
emphasise that any proposals on advance care directives should be seen in the
context of reform of the law on mental capacity generally, because of the close
linkage between issues such as capacity, consent to treatment, refusal of
treatment and the appointment of proxies or attorneys by a person with capacity
to represent their views in the event of their incapacity.
(2)       Examples of advance care directives


1.12       While much of the literature on advance care directives centres
around the end-of-life setting (because many of the high-profile cases have
involved end-of-life decisions) the Commission emphasises that advance care
directives are not confined to this setting. Examples of advance care directives
that have arisen in practice include:
        Refusal of blood transfusions7
        Refusal of a leg amputation8
 
 
4
      See Report on Vulnerable Adults and the Law (LRC 83-2006), paragraphs 1.45-
      1.48.
5
      See the discussion in paragraph 1.33, below, of the Council of Europe"s 2009
      Draft Recommendation on Principles Concerning Continuing Powers of Attorney
      and Advance Directives for Incapacity.
6
      Report on Vulnerable Adults and the Law (LRC 83-2006), paragraph 3.36.
7
      See Fitzpatrick v FK [2006] IEHC 392, [2008] 1 ILRM 68 and Fitzpatrick v FK (No
      2) [2008] IEHC 104, discussed at paragraphs 1.49-1.55, below.
8
      See Re C [1994] 1 WLR 290 (in which the patient who refused the amputation
      survived), discussed at paragraph 1.29, below.
 
 
                                       10
 
        Refusal of treatments by pregnant women9
        Refusal of treatment or procedures which may affect a woman"s
        fertility10
        Do Not Resuscitate (DNR) Orders
        Withdrawal of all life-sustaining treatment.11


1.13        Thus, advance care directives apply in a number of settings: in the
context of continuing care for those with chronic medical conditions which are
not life-threatening; for those who wish to refuse certain treatments in a specific
setting, such as pregnancy; and for those who wish to express their views in an
end-of-life context. While end-of-life settings for advance care directives are
most likely to produce the most debate and discussion - and requirements for
close regulation - advance care directives can also arise in a continuing-life
setting also.
 
 
C         The development of the law on advance care directives


1.14       In this Part, the Commission discusses the emergence of advance
care directives in other States, notably the United States and the United
Kingdom, largely associated with a number of high-profile court cases involving
end-of-life treatment. The Commission then addresses the emergence of
international instruments in this area, notably the Council of Europe"s 2009 Draft
Recommendation on Principles Concerning Continuing Powers of Attorney and
Advance Directives for Incapacity, which seeks to build on the 1997 Convention
on Human Rights and Biomedicine and a 1999 Recommendation on Mental
Capacity. The Commission then discusses the emergence of the debate on
advance care directives in Ireland from the 1980s, which has also developed by
reference to a number of high-profile end-of-life cases.


1.15        In 1967, in response to the advances in medical science already
mentioned, Luis Kutner, a US attorney, drafted the first -living will.- It was
intended to serve a number of purposes. First, it was intended to take the
burden of making end of life decisions from physicians and relatives. Second, a
living will enabled a person to become part of the decision making process,
even after they had lost capacity or, perhaps, merely the ability to communicate.
 
 
 
 
9
      Re T (adult: refusal of medical treatment) [1992] 4 All ER 649.
10
      Code of Practice for Mental Capacity Act 2005, at paragraph 9.7.
11
      See Re AK [2001] 1 FLR 129, at paragraph 1.30.
 
 
                                        11
 
Third, the existence of living wills helped educate medical professionals that life-
prolonging treatment is not always preferable.12


1.16        As already noted, the Commission"s Report on Vulnerable Adults and
the Law13 supports a presumption of capacity and a functional approach to
determining capacity. This is based, in turn, on the view that decision-making
should remain for as long as possible in the hands of the individual involved,
that assisted decision making (through a Personal Guardian) should be the next
step, and that substitute decision making should be postponed for as long as
possible. The Commission recognises that this approach is based on the
acceptance that substituted decision-making may be flawed,14 because the
decisions of the substitute decision-maker may not reflect the views of the
individual but rather the personal opinions of the substitute. 15 This has, in turn,
also contributed to the growth in support for the advanced expression of a
patient"s views.
(1)           Developments in the United States
(a)           Quinlan case


1.17       Support for advance care directives (or -living wills- as they are
commonly called in the United States) grew in the aftermath of a number of
court decisions that involved the withdrawal of life support treatment. In 1976, in
Re Quinlan16 the father of Karen Ann Quinlan, a 22 year-old woman who was in
a persistent vegetative state, applied for an order to discontinuance -all
extraordinary medical treatment- for her. He argued that the withdrawal of
treatment was what his daughter would have wanted had she been able to
express her wishes. Her physicians had refused to turn off her artificial
respirator, fearing that ending treatment might involve criminal liability and
would be contrary to medical ethical practice and standards. The New Jersey
Supreme Court held that the State"s undoubted interest in preserving life
-weakens and the individual"s right to privacy grows as the degree of bodily
invasion increases and the prognosis dims. Ultimately there comes a point at
which the individual"s rights overcome the state interest. It is for that reason that
 
12
      Morgan Capron -Advance Directives- in Kulise and Sige (eds) A Companion to
      Bioethics (1998), at 263.
13
      LRC 83-2006.
14
      Vig, Taylor, Starks, Hopley, Fryer-Edwards -Beyond Substituted Judgment: How
      Surrogates Navigate End-Of-Life Decision-Making- (2006) 54 (11) Journal of the
      American Geriatrics Society 1688.
15
      Ibid.
16
      355 A.2d 647 (1976).
 
 
                                       12
 
we believe Karen"s choice, if she were competent to make it, would be
vindicated by the law.- On that basis, the Court held that her death would not be
caused by the withdrawal of artificial respiration but by her illness and, on that
basis, made the order sought.
(b)           Legislative developments


1.18        The Quinlan case highlighted the absence of legislation on advance
care directives. Within months, the first advance care directive legislation was
enacted by the Californian legislature, 17 with other states following this lead. In
1985 the US Uniform Law Commissioners18 drafted the Uniform Rights of the
Terminally Ill Act, which was amended in 1989. The purpose of the Act was to
provide means by which a person could set out their preferences with regard to
life-sustaining medical treatment.19 It also sought to provide a consistent
approach to end-of-life decision-making.20 The Uniform Law Commissioners,
acknowledged, however, that the scope of the Act was narrow as it was limited
to patients suffering from a terminal illness.21
(c)           Cruzan v Director of Missouri Department of Health


1.19       Over a decade after the Quinlan case, the decision of the US
Supreme Court in Cruzan v Director of Missouri Department of Health 22 led to a
second generation of legislation on this issue. In that case, the family of Nancy
Cruzan, who was in a persistent vegetative state, applied for a court order to
withdraw life-sustaining medical treatment based on an earlier conversation in
which Ms Cruzan had stated she did not wish to live if she would face life as a
-vegetable". The case involved the application of the Missouri Uniform Rights of
the Terminally Ill Act, which was based on the 1985 Uniform Rights of the
Terminally Ill Act.


1.20      In Cruzan the US Supreme Court held that competent persons have
a -constitutionally protected liberty interest in refusing unwanted medical
 
17
      Natural Death Act 1976 (Cal).
18
      The National Conference of Commissioners on Uniform State Laws (NCCUSL),
      established in 1892, comprises over 300 lawyers appointed by each US state
      government to research, draft and promote the enactment of uniform state laws in
      areas where uniformity as between each state in the US federal system is
      desirable and practical. See generally www.nccusl.org
19
      Uniform Rights of the Terminally Ill Act 1985, at 1.
20
      Ibid.
21
      Ibid.
22
      497 US 261 (1990).
 
 
                                         13
 
treatment.-23 This has been interpreted as implicitly establishing -the right to
engage in advance planning for incapacity.- 24 But the Supreme Court also held
that states could insist in their legislation on -clear and convincing evidence- of
a patient"s wishes before permitting hospitals to withdraw life support, as
Missouri had done in its Uniform Rights of the Terminally Ill Act. The Supreme
Court noted that written instructions - such as those provided in a living will -
are persuasive evidence of an individual"s -prior expressed wishes- regarding
medical treatment but that the -informal, casual statements her friends and
family remembered- would be insufficient. 25 On that basis, the Court in Cruzan
refused to order the withdrawal of life-sustaining medical treatment.
(d)        Further legislative developments


1.21        In the aftermath of Cruzan, the United States Federal Congress
enacted the Patient Self-Determination Act 1990, which partially addressed the
problem of educating both patients and doctors. It required health-care
institutions receiving federal funds to inform patients of their right to refuse life-
sustaining treatments and to complete advance care directives. The 1990 Act
also states that if a person has an advance directive, it must be recorded in that
person"s medical records.


1.22         End-of-life cases in the United States continue to provoke public
debate and controversy. The most high-profile in recent years involved Terri
Schiavo, a Florida woman who, having suffered a cardiac collapse at her home
in 1990, was later diagnosed as being in a PVS condition. In 1998, her husband
Michael Schiavo applied to the Florida courts to have her feeding tube removed.
The application was opposed by Terri Schiavo"s family, and this led to extended
litigation in the State and federal courts, as well as legislative interventions at
State and federal level. Ultimately, in 2005, a Florida court made a final order to
remove the feeding tube and Terri Schiavo died shortly after this. 26
(2)        Developments in the UK


1.23        A similar pattern concerning advance care directives emerged in the
United Kingdom, beginning with a number of cases and culminating in
legislation enacted in 2005, the Mental Capacity Act 2005, which implemented a
 
 
 
23
      497 US 261 (1990), at 278.
24
      Gallagher -Advance Directives for Psychiatric Care: A Theoretical and Practical
      Overview for Legal Professionals- (1998) 4 Psychol Pub Pol"y & L 746 at 796.
25
      Ibid, at 266-268.
26
      See generally Caplan, McCartney, Sisti (ed), The Case of Terri Schiavo: Ethics at
      the End of Life (2006).
 
 
                                       14
 
1995 English Law Commission Report that responded to the high-profile Bland
end-of-life case.
(a)       Airedale NHS Trust v Bland


1.24       Airedale NHS Trust v Bland27 involved Tony Bland who, as a 17 year
old, was severely injured in the 1989 Hillsborough football disaster, in which 96
people died in a crush of people at Sheffield Wednesday"s Hillsborough stadium
before the 1989 FA Cup semi final. The injuries led to profound brain damage,
leaving him in a persistent vegetative state (PVS). He was not able to see, hear,
taste, smell, speak or communicate in any way, was incapable of involuntary
movement, could not feel pain and had no cognitive function. He was able to
breathe unaided but as he could not eat or swallow food, he was kept alive on a
life support system involving a nasogastric (ng) tube, a feeding tube inserted
through the nasal passage and reaching into the stomach.28


1.25        The unanimous view of all the medical team treating Mr Bland was
that he had no hope whatsoever of recovery or improvement of any kind. Just
over 3 years after he received the injuries, his consultant, supported by other
medical experts, reached the conclusion that it would be appropriate to cease
further treatment, that the artificial feeding through the nasogastric tube should
be withdrawn and that no antibiotic treatment should be given if he developed
an infection. The effect would be that, within 2 to 3 weeks he would die by
starvation. The NHS Trust treating Mr Bland applied for a declaration that the
withdrawal of artificial nutrition and hydration (ANH) in these circumstances
would be lawful and that the only treatment required after this would be the sole
purpose of enabling him to allow him to end his life and die peacefully with the
greatest dignity and the least pain, suffering and distress. The application was
supported by his parents and family.


1.26       The House of Lords decided that a doctor treating a patient who did
not have the capacity to decide whether or not to consent to treatment was not
under an absolute obligation to prolong the patient"s life regardless of the
circumstances or the quality of the patient"s life. The Court held that the test to
be applied was whether it was in the patient"s best interests not to prolong life
because treatment would confer no benefit on him. On that basis, if a
responsible and competent doctor made the decision to discontinue treatment,
no criminal offence would be involved. Thus the House of Lords agreed that the
declaration that had been applied for could be made.
 
 
27
      [1993] 1 All ER 821.
28
      This is to be contrasted with a second form of feeding tube, the percutaneous
      endoscopic gastrostomy (PEG) tube, which in inserted directly through the
      stomach wall.
 
 
                                      15
 


1.27       Two of the Law Lords also expressed views on the potential legal
status of advance care directives. Lord Keith stated:29
            -an adult, who is conscious and of sound mind-is completely at
            liberty to decline to undergo treatment, even if the result of his doing
            so is that he will die. This extends to the situation where the person,
            in anticipation of his... entering into a condition such as PVS, gives
            clear instructions that is such event his is not to be given medical
            care, including artificial feeding, designed to keep him alive.-


1.28        Similarly, Lord Goff stated: 30
            -a patient of sound mind may, if properly informed, require that life
            support should be discontinued: see Nancy B v Hotel-Dieu de
            Quebec.31 Moreover, the same principle applies where the patient"s
            refusal to give his consent has been expressed at an earlier date...
            though in such circumstances especial care may be necessary to
            ensure that the prior refusal of consent is still properly to be regarded
            as applicable in the circumstances which have subsequently
            occurred (see eg Re T (adult: refusal of medical treatment).32 -
(b)         Case law after Bland


1.29        In Re C,33 a 68-year old man with chronic paranoid schizophrenia
suffered from the delusion that he was a world famous doctor who had never
lost a patient. He developed gangrene in his leg, but refused amputation despite
the hospital"s assessment that he would die immediately if the operation was
delayed. He sought an injunction to prevent the hospital from amputating his leg
in the future. Thorpe J was prepared to find him competent and granted the
injunction. Mr C survived without the amputation. Re C is an illustration that
advance care directives are not confined to end-of-life situations but also
involve the continuation of care.


1.30       In Re AK,34 a 19-year old patient suffered from a progressive neuro-
muscular disease causing paralaysis. He informed his carers, by means of an
eyelid movement, that he would wish his artificial ventilation to be stopped if he
could no longer communicate. The health authority applied to the High Court for
 
29
       [1993] 1 All ER 821, at 860.
30
       Ibid, at 866.
31                      th
       (1992) 86 DLR (4 ) 385 (Quebec Superior Court).
32
       [1992] 4 All ER 649.
33
       [1994] 1 WLR 290.
34
       [2001] 1 FLR 129.
 
 
                                        16
 
a declaration that it would be lawful, in accordance with AK"s wishes, to
discontinue artificial ventilation, nutrition and hydration, two weeks after AK lost
all ability to communicate. Hughes J, in granting the declaration, confirmed the
-vital nature of the principle of autonomy- and had -no doubt- of AK"s capacity,
and the validity and applicability of the directive. 35


1.31       While both Re C and Re AK were decided prior to the enactment of
the English Mental Capacity Act 2005, the decisions indicate the willingness of
the English judiciary to uphold valid and applicable advance care directives.
(c)        Legislative developments: Mental Capacity Act 2005


1.32      In the aftermath of the Bland case, the Law Commission for England
and Wales proposed, in the context of a review of mental capacity law
(comparable to this Commission"s 2006 Report on Vulnerable Adults and the
Law) that an -advance refusal of treatment- should have legal standing. 36 This
was implemented in the English Mental Capacity Act 2005. The 2005 Act is
accompanied by a Code of Practice, which is in line with the recommendations
of the Law Commission. The Commission returns to the detailed contents of the
English 2005 Act and Code of Practice in Chapter 3.
(3)        Developments in the Council of Europe


1.33       Ireland was a founding member of the Council of Europe in 1949,
which was established to promote human rights in Europe in the aftermath of
World War II. The Council"s most well known human rights document is the
1950 Convention for the Protection of Human Rights and Fundamental
Freedoms (often referred to as the European Convention on Human Rights).
The European Convention on Human Rights Act 2003 incorporated into Irish
law (subject to the Constitution) the rights contained in the 1950 Convention. In
addition to the 1950 Convention, the Council of Europe has developed a
number of specific Conventions 37 and Recommendations38 that have an effect
 
 
 
35
      [2001] 1 FLR 129, at 136.
36
      Law Commission for England and Wales Report on Mental Incapacity (No 231
      1995) at paragraph 5.16.
37
      A Council of Europe Convention, such as the 1950 Convention for the Protection
      of Human Rights and Fundamental Freedoms, only has legal force in Ireland after
      it has been signed and ratified by the State and enacted by the Oireachtas, as
      was done by the European Convention on Human Rights Act 2003.
38
      A Council of Europe Recommendation, while not having the status of a
      Convention, is binding on the State as a member of the Council of Europe, but it
      does not form part of Irish law. The Committee of Ministers of the Council of
 
                                       17
 
on this Report. The Council of Europe 1997 Convention on Human Rights and
Biomedicine deals with the protection of people from the misuse of biological or
medical advances. Article 9 of the 1997 Convention is of relevance to this
Report as it states:
          -The previously expressed wishes relating to medical intervention by
          a patient who is not, at the time of the intervention, in a state to
          express his or her wishes shall be taken into account.-


1.34       The Council of Europe has also been engaged in the development of
a Committee of Ministers Recommendation on two related issues of direct
relevance to this Report, Continuing Powers of Attorney (in Ireland, called
Enduring Powers of Attorney) and Advance Directives. This would build on the
Committee of Ministers" 1999 Recommendation on Principles Concerning the
Legal Protection of Incapable Adults, which recommended that legislation for
those with incapacity should maximise the preservation of capacity and involve
the least interference with the individual"s autonomy. In its 2006 Report on
Vulnerable Adults and the Law, the Commission supported the adoption of the
principles in the 1999 Recommendation, in particular by including them in the
general principles underpinning the draft Scheme of a Mental Capacity Bill
attached to the 2006 Report.39 These principles have also been included in the
Government"s Scheme of a Mental Capacity Bill 2008,40 which proposes to
implement the 2006 Report.


1.35       In April 2009, the Council of Europe"s Committee of Experts on
Family Law published a Draft Recommendation on Principles Concerning
                                                                    41
Continuing Powers of Attorney and Advance Directives for Incapacity, which
was forwarded to the Committee of Ministers for final approval. The draft
Recommendation refers with approval to the 1999 Recommendation on
Principles Concerning the Legal Protection of Incapable Adults and notes that
legislation in Council of Europe member states concerning adults with
incapacity promotes autonomy and self-determination. The draft
Recommendation also refers in this respect to the requirements to promote
autonomy in the 2006 UN Convention on the Rights of Persons with
 
 
 
      Europe monitors the extent to which a Recommendation has been implemented
      in a member state.
39
      See Report on Vulnerable Adults and the Law (LRC 83-2006), paragraphs 2.28
      and 2.99; and section 4 of the draft Scheme of a Mental Capacity and
      Guardianship Bill (Report Appendix, p.170).
40
      Head 1 of the Scheme of a Mental Capacity Bill 2008, available at www.justice.ie
41
      Available at www.coe.int
 
 
                                       18
 
Disabilities.42 The draft Recommendation also notes that where member states
have enacted legislation on continuing powers of attorney and advance
directives (such as the English Mental Capacity Act 2005 and the other
examples discussed below), increasing numbers of adults of all ages are
making use of them. The draft Recommendation ends by proposing that
member states -promote self-determination for capable adults by introducing
legislation on continuing powers of attorney and advance directives or by
amending existing legislation, with a view to implementing the principles
contained in the appendix to this [draft] recommendation.-


1.36       The draft Recommendation proposes that member states -should
promote self-determination for capable adults in the event of their future
incapacity, by means of continuing powers of attorney and advance directives-
(Principle 1). The draft Recommendation suggests that an advance care
directive be defined as -instructions or wishes issued by a capable adult
concerning issues that may arise in the event of his or her incapacity- (Principle
2). The draft Recommendation suggests that advance care directives may apply
to health, welfare and personal matters, to economic and financial matters, and
to the choice of a guardian, should one be appointed (Principle 14). As to legal
effect in general, it recommends that States should decide to what extent
advance care directives should have binding effect; and that advance directives
which do not have binding effect should be treated as statements of wishes to
be given due respect. The draft Recommendation also provides that States
should address the issue of situations that arise in the event of a substantial
change in circumstances (Principle 15).


1.37       As to the form of an advance care directive, the draft
Recommendation proposes that member states should -consider whether
advance directives or certain types of advance directives shall be made or
recorded in writing if intended to have binding effect.- States should also
consider what other provisions and mechanisms may be required to ensure the
validity and effectiveness of those advance directives (Principle 16). The draft
Recommendation provides that an advance directive should be revocable -at
any time and without any formalities- (Principle 17).


1.38      The Commission understands at the time of writing (September
2009) that the draft Recommendation is likely to be adopted by the Committee
 
 
42
      In its Report on Vulnerable Adults and the Law (LRC 83-2006), paragraphs 1.45-
      1.48, the Commission noted that a new legislative framework on mental capacity
      in Ireland was required to meet the State"s obligations under the 2006
      Convention. The Government"s Scheme of a Mental Capacity Bill 2008, which
      proposes to implement the Commission"s 2006 Report, would achieve this
      general objective.
 
 
                                      19
 
of Ministers of the Council of Europe by the end of 2009 or early 2010.43 While it
is not yet, therefore, a final Recommendation, the Commission considers that
the work leading up to the publication of the draft Recommendation indicates a
growing consensus in the Council of Europe about the need to facilitate the use
of advance care directives. In that respect, the principles in the draft
Recommendation are of great assistance in the context of the consideration of
any proposed legislation in Ireland. It is also notable that the draft
Recommendation also deals with continuing (enduring) powers of attorney, a
topic dealt with by the Commission in its 2006 Report on Vulnerable Adults and
the Law, which made proposals on the reform of the law on mental capacity.
This inclusion indicates that advance care directives should be considered in
the wider context of legislation that deals, or proposes to deal, with mental
capacity.
(4)       Legislation in Council of Europe Member States


1.39       As the draft Recommendation indicates, many Council of Europe
member states have enacted legislation covering advance care directives. In
addition to the English Mental Capacity Act 2005, the Commission notes that
legislation had been enacted in this area in at least 20 Council of Europe
member states by 2008.44 For example, in Finland, article 8 of the Act on the
Status and Rights of Patients 1992 states that a person must not be given
treatment which they have previously refused. In the Netherlands, Article 450 of
the Medical Contract provides for a written advance care directive. 45 In Chapter
3, the Commission considers in detail these and other legislative models from
around the world.46
 
 
 
43
      Information supplied to the Commission by the Secretariat of the Committee of
      Experts on Family Law (CJ-FA) of the Council of Europe.
44
      See Alzheimer Europe, Advance Directives: Summary of the Legal Provisions
      Relating to Advance Directives per Country (May 2005), available at
      www.alzheimer-europe.org, Irish Council for Bioethics Is It Time for Advanced
      Healthcare Directives? (2007), p.5, available at www.bioethics.ie, and Report of
      the 4th meeting in 2008 of the Committee of Experts on Family Law (Working
      Party on Incapable Adults) (December 2008), available at www.coe.int.
45
      Nys -Emerging Legislation in Europe on the Legal Status of Advance Directives
      and Medical Decision-Making with Respect to an Incompetent Patient (-Living
      Wills")- (1997) 4 European Journal of Health Law 179 at 184.
46
      These include the Medical Treatment Act 1994 (Australian Capital Territory), the
      Advance Medical Directive Act 1996 (Singapore) and the Health Care Directives
      and Substitute Health Care Decision Makers Act 1997 (Canada).
 
 
                                       20
 
(5)       The development of advance care directives in Ireland


1.40       Developments in Ireland have followed a similar pattern as other
States, with the first significant discussion of the issue being a lecture by
Costello J in 1986 that addressed the US Quinlan case of 10 years previously.
In 1996, the High Court and Supreme Court dealt with a high-profile case
involving a woman who had been in a near PVS state for over 20 years. The
development of a strong hospice movement in Ireland in recent years has also
raised the profile of advance care planning at the end of life; and, in 2007 the
Irish Council for Bioethics published an Opinion on Advance Care Directives. 47
(a)       Costello J's 1986 lecture on the terminally ill


1.41       In a lecture given in 1986 on the law concerning the terminally ill,48
Costello J noted that, in Re Quinlan,49 the New Jersey Supreme Court had
concluded that the withdrawal of artificial respiration from Karen Quinlan would
not amount to homicide on the basis that her death had not been as a result of
the withdrawal of life-support but had resulted from natural causes. He also
suggested that the right of the terminally ill patient to forego life-sustaining
treatment is compatible with the provisions of the Constitution of Ireland:50
          --there are very powerful arguments to suggest that the dignity and
          autonomy of the human person (as constitutionally predicated)
          require the State to recognise that decisions relating to life and death
          are, generally speaking, ones in which a competent adult should be
          free to make without outside restraint, and that this freedom should
          be regarded as an aspect of the right to privacy which should be
          protected as a -personal" right by Article 40.3 [of the Constitution of
          Ireland]- [I]n the case of the terminally ill, it is very difficult to see
          what circumstances would justify the interference with a decision by a
          competent adult of the right to forego or discontinue life-saving
          treatment.-


1.42       These views, expressed by a leading Irish judge, even if written
outside his judicial role, strongly support the concept that an advance care
directive would be enforceable in Irish law. Indeed, they were also expressly
referred to ten years later in a very similar Irish case.
(b)       The Ward of Court case (1996)
 
47
      Irish Council for Bioethics Is It Time for Advanced Healthcare Directives? (2007).
48
      Costello -The Terminally Ill-The Law"s Concern- (1986) 21 Irish Jurist 35.
49
      355 A 2d 647 (1976): see paragraph 1.15, above.
50
      Costello -The Terminally Ill - The Law"s Concerns- (1986) 21 Irish Jurist 35, at
      42.
 
 
                                        21
 


1.43         Ten years after Costello J delivered his lecture, his comments were
cited with approval in the Irish equivalent of the Quinlan case, Re a Ward of
Court (No 2).51 This case involved a 46 year old woman,52 who had suffered
severe brain damage during a routine surgical procedure 24 years previously.
During those 24 years, she had been in a near persistent vegetative state (near
PVS). Initially, she had been fed through a nasogastric (ng) tube, but this was
later replaced by the second major form of artificial feeding tube, the
percutaneous endoscopic gastrostomy tube, usually called a PEG tube. Her
mother applied for directions from the courts as to the proper care and
treatment of her daughter. As with the other cases already discussed, such as
Quinlan, Cruzan and Bland, the issue for the courts was whether it was
permissible in Irish law to withdraw the medical treatment, in particular the form
of artificial and nutrition and hydration (ANH) being given to her through the
PEG tube feeding.


1.44       The High Court (Lynch J) and, on appeal, the Supreme Court
(Hamilton CJ, O"Flaherty, Blayney and Denham JJ; Egan J dissenting) broadly
followed the approach taken by the House of Lords in the Bland case and held
that it was in the woman"s best interests that the artificial nutrition and hydration
(ANH) should be withdrawn and that she should be allowed -to die in
accordance with nature with all such palliative care and medication as is
necessary to ensure a peaceful and pain-free death.- The High Court and, on
appeal, the Supreme Court, stated that this withdrawal was lawful. The courts
also declared that, after this, the non-use of antibiotics for treatment of
infections, other than in a palliative way to avoid pain and suffering, was also
lawful. The courts also made an order allowing the woman"s family to make
such arrangements as they considered suitable to admit her to a facility that
would not regard the withdrawal of ANH to be contrary to their code of ethics. 53
 
 
 
 
51
      [1996] 2 IR 79.
52
      The case was heard in camera and the parties were not identified at the time of
      the court proceedings: see Re a Ward of Court (No 1) [1996] 2 IR 73. Ten years
      later, in 2006, her mother Margaret Chamberlain wrote to The Irish Times (11
      April 2006) identifying herself and naming her daughter Lucy Chamberlain as the
      -Ward of Court- in the title of the 1996 case. Her letter had been prompted by
      another high-profile end-of-life case in the United States, the Terri Schiavo case:
      see paragraph 1.20, above.
53
      The broad form of the orders made are set out at [1996] 2 IR 79, at 99.
 
 
                                        22
 


1.45        In the Supreme Court, Hamilton CJ specifically quoted from and
approved the views expressed by Costello J in his 1986 lecture on the
terminally ill.54 He added:55
               -A competent adult if terminally ill has the right to forego or
               discontinue life-saving treatment... and that the exercise of that right
               would be lawful and in pursuance of [the person"s] constitutional
               rights.-


1.46           Similarly, O"Flaherty J stated:
               -consent to medical treatment is required in the case of a competent
               person... and, as a corollary, there is an absolute right in a competent
               person to refuse medical treatment even if it leads to death.- 56
He considered that -it would be correct to describe the right in our law as
founded both on the common law as well as the constitutional rights to bodily
integrity and privacy.-57 Denham J agreed, adding that:
               --medical treatment may be refused for other than medical reasons,
               or reasons most citizens would regard as rational, but the person of
               full age and capacity may make the decision for their own reasons.- 58


1.47        Although the Ward of Court case did not require the courts to deal
directly with advance care directives, as in Bland the Supreme Court made
indirect references to the issue. O"Flaherty J stated that he found it:
               -impossible to adapt the idea of the -substituted judgment" to the
               circumstances of this case and, it may be, that it is only appropriate
               where the person has had the foresight to provide for future
 
 
54
       [1996] 2 IR 79, at 125.
55
       Ibid, at 125-6.
56
       Ibid at, 129.
57
       Ibid.
58
       Ibid at 156. It is interesting to note that the following italicised line in the
       unreported approved judgment of Denham J in Re a Ward of Court (No 2) 27 July
       1994 at 24 does not appear in either In re a Ward of Court (withholding medical
       treatment) (No 2) [1996] 2 IR 79 at 156 or In re a Ward of Court (withholding
       medical treatment) (No 2) [1995] 2 ILRM 401 at 454:
 
       --medical treatment may be refused for other than medical reasons. Such
       reasons may not be viewed as good medical reasons, or reasons most citizens
       would regard as rational, but the person of full age and capacity may take the
       decision for their own reasons.-
 
 
                                          23
 
           eventualities. That must be unusual (if it ever happens) at the present
           time; with increased publicity in regard to these type of cases it may
           get more common.-59


1.48       Campbell has argued that O"Flaherty J"s comments suggest that if an
individual had the foresight to express his wishes in an advance directive, an
Irish court would uphold its validity. 60 Furthermore, Madden suggests that a
court would uphold the validity of an advance directive provided first, that the
author was competent and informed when drafting it, and second, that it was
clear and specific to the patient"s current situation. She contends that this is in
keeping with the court"s development of the unenumerated constitutional right to
refuse medical treatment.61 Mills, having described Ward as a -categorical
exaltation of personal autonomy-, notes that its only logical corollary is that an
-advance statement, properly made and containing no directives that were
themselves unlawful, would be acceptable to Irish law.-62
(c)        K Case on Blood Transfusions (2006 and 2008)


1.49       In Fitzpatrick v FK,63 the High Court made an interlocutory order that
a 23-year old Congolese woman (Ms K) who had refused a blood transfusion
should be given the transfusion against her will in order to save her life. Despite
finding that Ms K was competent to make healthcare decisions, Abbott J found
that the welfare of Ms K"s new born child, with no other apparent parent, was
paramount and should override the wishes of his mother. The High Court had
previously ordered transfusions to be administered in cases where there was
doubt as to the capacity of the patient to refuse, or where the decision to refuse
treatment was made by a parent on behalf of a child. On the basis of the
evidence, however, Ms K was neither incapacitated nor a minor.


1.50        It is thus unsurprising that a full hearing of the issues in the case later
came before the High Court (Laffoy J) in Fitzpatrick v FK (No 2)64 to determine
whether the transfusion given on the basis of the interlocutory order had been
lawfully given. Having undertaken a review of case law on mental capacity from
other jurisdictions, Laffoy J held that the following six principles were applicable
 
59
      [1996] 2 IR 79, at 133 (italics added).
60
      Campbell -The Case for Living Wills in Ireland- (2006) 12(1) Medico-Legal
      Journal of Ireland 2, at 6.
61
      Madden Medicine, Ethics & the Law (Tottel Publishing 2002), at paragraph 11.57.
62                                              nd
      Mills Clinical Practice and the Law (2         ed Tottel Publishing 2007), at paragraph
      329.
63
      [2006] IEHC 392, [2008] 1 ILRM 68.
64
      [2008] IEHC 104.
 
 
                                         24
 
when determining the capacity question. The first principle states that there is a
rebuttable presumption that an adult patient has the capacity to make a decision
to refuse medical treatment. The Commission notes that this is consistent with
the Commission"s recommendation in its 2006 Report on Vulnerable Adults and
the Law65 that mental capacity legislation contain a rebuttable presumption of
capacity,66 and this is included in the Government"s Scheme of a Mental
Capacity Bill 2008 which was published in September 2008. 67


1.51     Second, in determining whether a patient is deprived of capacity to
make a decision to refuse medical treatment, Laffoy J stated that the test is:
           -whether the patient"s cognitive ability has been impaired to the
          extent that he or she does not sufficiently understand the nature,
          purpose and effect of the proffered treatment and the consequences
          of accepting or rejecting it in the context of the choices available
          (including any alternative treatment) at the time the decision is
          made.-68


1.52      The Commission notes that this decision-specific cognitive test of
mental capacity is also consistent with the Commission"s recommendation in its
2006 Report on Vulnerable Adults and the Law and this is also included in the
Government"s Scheme of a Mental Capacity Bill 2008.


1.53        The third principle set out by Laffoy J was that the three-stage
approach to the patient"s decision-making process adopted in the English case
Re C,69 which involved the refusal of an amputation, 70 is a -helpful tool- in
applying that test. Laffoy J specifically noted that the Commission"s proposed
statutory functional test of capacity (in the 2006 Report on Vulnerable Adults
and the Law71) was consistent with the test in Re C. In applying Re C to the
facts of the case Laffoy J held, first, that Ms K did not sufficiently understand
and retain the information given to her by the Hospital personnel as to the
necessity of a blood transfusion to preserve her life; second, that she did not
believe that information and, in particular, that she did not believe that she was
likely to die without a blood transfusion being administered; and finally, that in
 
65
      LRC 83-2006.
66
      See paragraph 1.08, above.
67
      Available at www.justice.ie
68
      Citing Lord Donaldson in Re T (refusal of medical treatment) [1992] 4 All ER 649.
69
      Re C (adult: refusal of treatment) [1994] 1 WLR 290.
70
      See the discussion in paragraph 1.28, above.
71
      See paragraph 1.08, above.
 
 
                                       25
 
making her decision to refuse a blood transfusion, Ms K had not properly
weighed that information in the balance, balancing the risk of death inherent in
that decision and its consequences, including its consequences for her new-
born baby, against the availability of a blood transfusion that would preserve her
life.


1.54      The fourth principle set out by Laffoy J was that, with regard to the
treatment information by reference to which the patient"s capacity is to be
assessed, a clinician is under a duty to impart information as to what is the
appropriate treatment, that is:
           -what treatment is medically indicated, at the time of the decision and
           the risks and consequences likely to flow from the choices available
           to the patient in making the decision.-
Laffoy J held that Ms K"s clinicians had given her the information necessary to
enable her to make an informed decision as to whether to accept or refuse a
blood transfusion. That information was conveyed in layman"s terms from which
a competent adult whose capacity was not impaired should have understood
the gravity of the situation. The fifth principle set out by Laffoy J was that a
distinction was to be drawn between a misunderstanding of the treatment
information in the decision-making process, which may be evidence of lack of
capacity, and an irrational decision, which is irrelevant to the assessment.


1.55       The sixth principle discussed by Laffoy J was that the assessment of
capacity must have regard to -the gravity of the decision, in terms of the
consequences which are likely to ensue from the acceptance or rejection of the
proffered treatment.- Laffoy J rejected the suggestion of Ms K"s counsel that the
patient"s capacity should be measured against the nature of the decision, rather
than its consequences, citing the decision of the Supreme Court in Re a Ward
of Court (No 2)72 in support. When refusing a blood transfusion, Ms K had
suggested to the Master of the Hospital that Coca-Cola and tomatoes might be
an alternative solution to a blood transfusion. Laffoy J held that this suggestion
could -only ring alarm bells- as to Ms K"s appreciation of the gravity of the
situation when viewed objectively.


1.56       Laffoy J concluded that Ms K"s capacity was impaired to the extent
that she did not have the ability to make a valid refusal to accept a blood
transfusion. Therefore, the administration of the transfusion was not an unlawful
act, and did not constitute a breach of her rights either under the Constitution or
the Convention.
 
 
 
 
72
      [1996] 2 IR 79.
 
 
                                      26
 
(d)        Current use of advance care directives in Ireland and calls for a
           legislative framework


1.57        As O"Flaherty J noted in the Ward of Court case the corollary to the
right to consent is the right to refuse medical treatment. Although there is
currently no legislative framework for advance care planning in Ireland, many
people have prepared written advance care directives, sometimes with the
benefit of medical and legal advice, and general hospitals deal on a regular
basis with patients who verbally express treatment preferences, including
refusals of treatment and -do not resuscitate- requests.73 In a study conducted
in 2003, 27% of physicians had experience of advance care directives made by
Irish patients.74 The Commission is also aware that a number of hospitals in
Ireland have developed guidelines and protocols to deal with advance care
directives, based on best practice models from other States, notably the UK. 75


1.58       In 2007, the Irish Council for Bioethics, having engaged in extensive
public consultation and having conducted an opinion poll which supported the
introduction of a legal framework in this area, published its Opinion Is It Time for
Advance Healthcare Directives?76 In this Opinion, the Council stated that the
-lack of legislation makes the status of advance directives unclear- and that, in
turn, the lack of clarity was a result of the limited number of cases that had
discussed the issues of a patient"s previous wishes regarding treatment. 77 The
Council therefore concluded that -there is both a need and an opportunity to
develop a legal framework for advance directives to facilitate their use and
implementation.-78 The Commission also notes that the Council"s Opinion
contains some sample advance care directives, drawn from a number of
different States.79
 
 
 
 
73
      Irish Council for Bioethics, Opinion, Is It Time for Advance Healthcare Directives?
      (2007), pp.6-9.
74
      Fennell, Butler, Saaidin and Sheikh, -Dissatisfaction with Do Not Attempt
      Resuscitation Orders: A Nationwide Study of Irish Consultant Physician
      Practices- (2006) 99(7) Irish Medical Journal 208.
75
      Information supplied to the Commission during the consultation process.
76
      Available at www.bioethics.ie
77
      Irish Council for Bioethics, Opinion, Is It Time for Advance Healthcare Directives?
      (2007), at 6.
78
      Ibid at 15.
79
      Ibid, pp.70-84 (Appendix 4).
 
 
                                        27
 
(6)       Conclusions on the need for a legislative framework


1.59        The Commission has already noted that the State"s international
obligations, in particular under the 2006 UN Convention on the Rights of
Persons with Disabilities and the Council of Europe"s 2009 Draft
Recommendation on Principles Concerning Continuing Powers of Attorney and
Advance Directives for Incapacity,80 reinforce the arguments in favour of
legislation in this area.


1.60        It is also clear that legislation on advance care directives should be
placed in the wider setting of the general law on mental capacity. In its 2006
Report on Vulnerable Adults and the Law 81 the Commission indicated that it
would deal with advance care directives separately from its general proposals
for reform made in that Report. Nonetheless, the Commission also included in
the Report and its Draft Scheme of a Mental Capacity Bill a general principle
that -account must be taken of the person"s past and present wishes where they
are ascertainable.-82 This is consistent with Article 9 of the Council of Europe
1997 Convention on Human Rights and Biomedicine and the 2009 Draft
Recommendation on Principles Concerning Continuing Powers of Attorney and
Advance Directives for Incapacity.83 The Commission very much welcomes that
Head 1 of the Government"s Scheme of a Mental Capacity Bill 2008, which
proposes to implement the Commission"s 2006 Report, also contains this
legislative guiding principle.


1.61       On the basis of the review of relevant case law and developments at
international level, including the Council of Europe"s 2009 Draft
Recommendation on Principles Concerning Continuing Powers of Attorney and
                                   84
Advance Directives for Incapacity, the Commission has concluded that there
is a growing momentum favouring the introduction of a legislative framework for
advance care directives. To the extent that case law in Ireland, notably In re a
Ward of Court (No.2)85 and Fitzpatrick v FK,86 has addressed this matter, it is
clear that an advance care directive made by a person with full capacity would
 
80
      See paragraphs 1.30-1.36, above.
81
      LRC 83-2006.
82
      LRC 83-2006, at paragraph 2.106; and Head 4 of the Draft Scheme of a Mental
      Capacity Bill (Report Appendix, p.171).
83
      See paragraphs 1.32-1.36, above.
84
      See paragraphs 1.32-1.36, above.
85
      [1996] 2 IR 79.
86
      Fitzpatrick v FK [2006] IEHC 392, [2008] 1 ILRM 68 and Fitzpatrick v FK (No 2)
      [2008] IEHC 104.
 
 
                                      28
 
be upheld. Indeed, this conclusion follows from the experience in other States,
including the United States and the UK.


1.62       In the absence of a clear legislative framework, the Commission
acknowledges that health care professionals have faced difficulties in dealing
with the many complex issues arising from advance decision making. The
Commission has concluded that, due to the complexity of many of the issues
involved, a clear statutory framework is necessary. In light of the general setting
of the law on capacity in which advance care directives are considered, it is
appropriate that this legislative framework should be placed within the wider
framework of the reform of the law on mental capacity. The Commission
therefore recommends that an appropriate legislative framework should be
enacted for advance care directives, as part of the wider context of reform of the
law on mental capacity in the Government"s Scheme of a Mental Capacity Bill
2008.


1.63      The Commission recommends that an appropriate legislative
framework should be enacted for advance care directives, as part of the reform
of the law on mental capacity in the Government"s Scheme of a Mental
Capacity Bill 2008.
(7)       The legislative framework in a wider health care setting


1.64       In the Commission"s view, any legislative framework must be seen in
the context of the ongoing development of good medical practice. In that
respect, the Commission considers it important not to see an advance care
directive merely as an end in itself - a legal -event- so to speak - but also as
part of a wider process that could facilitate the development and improvement
of healthcare planning.


1.65       Central to healthcare planning is good communication between
patients and medical professionals. Good communication results in improved
informed decision making, which is consistent with the concept of informed
consent and greater patient autonomy. This should also form part of any
proposed legislative scheme for advance care directives. 87 In developing the
concept of a health care plan, the patient is encouraged to make decisions
about their overall care plan. In order for this to reflect reality advice can and
should be sought from doctors, nurses, midwives or other health care
professionals.88 Treatment should be explained to patients in a way they can
understand and they should be encouraged to ask questions. Through this
process, the patient can then make an informed and truly autonomous decision.
 
 
 
87
      See paragraphs 1.86-1.95, below.
88
      For more on healthcare professionals see paragraphs 3.02-3.05.
 
 
                                      29
 


1.66       While many may not wish to discuss difficult health care decisions in
advance - including preparations for death and dying - discussions can prevent
misunderstanding when the time comes to making medical decisions. These
discussions can be with the person"s own local doctor, in a nursing home or in a
hospital. While communication is the key to making a healthcare plan, the
timing of such a discussion is also critical. 89 Discussions far in advance of the
actual event being discussed, such as stroke or heart attack, may become
redundant by the time they actually occur because relevant treatment options
may be very different by comparison with the time when the discussion took
place. Equally, discussing care options on the day that a person is admitted to a
nursing home may not be suitable, as the person is likely to be dealing with
other issues such as illness or loss of independence. 90


1.67        While some of these issues are outside the direct scope of this
Report, it is nonetheless worth noting the importance of health care
professionals being trained in the process involved in this discussion, and its
timing. It is essential that a healthcare plan is tailored to each individual and it
based on the wishes of the individual. 91 While this process may be time
consuming, it ensures that the preferences of the patient are made known.
Thus, a healthcare plan establishes the wishes of a patient and, through this
process, the dignity and autonomy of a patient is strengthened.


1.68      In the specific context of end-of-life decision-making, the Irish
Hospice Foundation"s Forum on the End-of-Life,92 which was launched in March
2009, aims to develop a -vision of how modern Ireland can address the
challenges of dying, death and bereavement.-93 The Forum also seeks to
determine the key issues at the end of life with input from the views and
concerns of the public and various organisations. All types of deaths - sudden,
traumatic and expected - form part of the discussions within the Forum. Among
the issues raised are the need for a clear policy on the fragmentation of care
 
89
      Froggatt, Vaughan, Bernard and Wild Advance Care Planning in Care Homes for
      Older People Final Report (April 2008) at 36.
90
      O"Shea, Murphy, Larkin, Payne, Froggatt, Casey, Ní Léime and Keys, End-of-Life
      Care for Older People in Acute and Long-Stay Care Settings in Ireland (2008).
91
      A survey conducted by the National Council on Ageing and Older People
      indicated that the medical profession tend to discuss treatment and services with
      the family rather than the patient. National Council on Ageing and Older People
      Perceptions on Ageism in Health and Social Services in Ireland (Report No. 85,
      2005), at 72.
92
      www.endoflife.ie
93
      Ibid.
 
 
                                       30
 
services, the need for palliative care to be made available in all care settings to
persons with dementia and the health and other effects of long term caring on
carers. In the specific context of this Report, the Forum is also addressing Do
Not Resuscitate Orders.


1.69         The consultations involved in the Forum will conclude at the end of
2009. Regional consultations will begin in 2010 with a final Report scheduled to
be published in April 2010. This Report will aim to reflect the views and issues
emerging from the forum workshops and submissions. A National Coalition will
then be established to advance the work of the Forum. In view of the wide
scope of the Forum"s deliberations, and its emphasis on planning at end of life,
it is clear that advance care directives will form an element of the analysis for
the IHF"s Report.


1.70        The Commission recognises the importance of the wider healthcare
planning framework within which its proposals on advance care directives
should be placed. Indeed, this wider setting formed an important part of the
discussion at the Commission"s Annual Stakeholder Conference in 2008, in
which the provisional recommendations in the Consultation Paper were
discussed. While the legislative framework envisaged by the Commission may
be limited to refusals of treatment (for the reasons identified below), 94 this does
not, for example, preclude the process outlined briefly here of good health care
planning between medical professional and their patients. Thus, the proposed
legislative framework does not prevent a person from expressing their wishes
concerning future medical treatment in the wider context of his or her health
care planning. Any legislative framework on advance care directives must,
therefore, be facilitative in nature and be seen in the wider setting of overall
health care planning and the emergence of the practice of developing individual
care plans between a medical professional and his or her patient.


1.71      The Commission recommends that the proposed statutory framework
on advance care directives should be facilitative in nature and be seen in the
wider context of a process of health care planning by an individual, whether in a
general health care setting or in the context of hospice care.
 
 
D          Scope of the Report


1.72       In this Part, the Commission discusses the scope of the
recommendations in this Report. The Commission emphasises that the
recommendations do not propose to change the effect of any act that is
currently prohibited by the criminal law. The Commission then points out that
the proposed legislative framework should apply to treatment refusals and that,
 
 
94
      See paragraphs 1.76-1.82, below.
 
 
                                      31
 
for various practical reasons, it will not encompass advance requests for
treatment. The third element concerning the scope of the Report is that the
Commission considers that advance care directives concerning mental health
treatment (which has been legislated for in other States) deserve separate
discussion and consideration, and have been excluded from the Commission"s
current review of the law.
(1)       Advance care directives and the law on euthanasia and assisted
          suicide


1.73      In the Consultation Paper, the Commission noted that euthanasia is
unlawful in Ireland and would, depending on the context, constitute either
murder or involuntary manslaughter.95 In the Consultation Paper the
Commission also noted that there is an extremely important distinction between
assisted suicide, which is also unlawful, and an advance care directive that
involves a refusal of life-sustaining treatment.96 As noted by Lord Goff in the
English case Airedale NHS Trust v Bland:97
          -...in cases of this kind, there is no question of the patient having
          committed suicide, nor therefore of the doctor having aided or
          abetted him in doing so. It is simply that the patient has, as he is
          entitled to, declined to consent to treatment which might or would
          have the effect of prolonging life, and the doctor has, in accordance
          with his duty, complied with the patient"s wishes.- 98


1.74       In In re a Ward of Court (No.2),99 the Supreme Court also
emphasised this important distinction, and the Commission fully supports this
view. Thus, where a person with capacity refuses treatment that might or would
have the effect of prolonging life and the person dies, he or she has not
committed suicide and any health care professional who complies with the
person"s wishes has acted lawfully and has not been involved in any criminal
act. The Commission reaffirms in this respect that legislation regarding advance
care directives which is consistent with this important distinction would not alter
existing law, under which euthanasia and assisted suicide constitute forms of
homicide. The Commission therefore emphasises that its final
 
 
 
95
      Consultation Paper on Bioethics: Advance Care Directives (LRC CP 51-2008), at
      paragraph 1.19.
96
      Ibid, at paragraph 1.20.
97
      [1993] 1 All ER 82.
98
      Ibid at 866.
99
      [1996] 2 IR 79.
 
 
                                      32
 
recommendations in this Report do not alter or affect these aspects of current
criminal law.


1.75      The Commission recommends that its proposed legislative
framework for advance care directives does not alter or affect current law on
homicide, under which euthanasia and assisted suicide are criminal offences.
(2)       Treatment requests and treatment refusals


1.76        An advance care directive enables a person to have a degree of
autonomy over future healthcare decisions. In the Consultation Paper, the
Commission noted an important distinction, namely, that while a person may
have a right to decide what is not to be done to their body this does not
necessarily mean they have a corresponding right to decide what is to be done
to their body.100 It has been argued that an aspect of the right to autonomy is
that a person may demand certain medical treatment, but the Commission
notes that a person does not have an absolute right to specific forms of medical
treatment, for example a demand that the State pay for a transplant operation.
In that respect, because this would involve very wide issues of clinical
judgement and the appropriate use of limited State resources the Commission
considers that its proposed legislative framework could not apply to such
situations.


1.77        The Commission notes that while there is no general legally
enforceable right to demand specific medical treatment, a person is perfectly
entitled to express their preferences. A person may, for example, wish to try an
alternative course of treatment. While the medical professional may not
consider the treatment to be particularly worthwhile, they might still agree to
pursue it. Thus, in practice an advance care directive, seen in the wider context
of health care plans and planning, could include requests about where a person
would like to be treated or where they would like to live in later years. For the
reasons already mentioned, this aspect of a directive would not have the legal
status envisaged in the Commission"s legislative scheme. The Commission is
aware that, while the majority of Irish people wish to die at home, only 20% do
so.101 This is not to say that an advance care directive, or for that matter a
health care plan, can change that reality, but it may assist in focusing an
individual"s need to plan how to change the wish into reality more often.
 
 
 
100
      Law Reform Commission Consultation Paper Bioethics Advance Care Directives
      (LRC CP 51-2008), at paragraph 1.23.
101
      O"Shea, Keegan, McGee -End-of-Life Care in General Hospitals: Developing a
      Quality Approach for the Irish Setting- Health Services Research Centre,
      Department of Psychology, Royal College of Surgeons in Ireland (2002), at 29.
 
 
                                     33
 


1.78        A related question arises as to whether a person could request in
advance that their medical treatment should continue indefinitely to sustain their
life. In general terms, the Commission agrees that a health care professional
should not be forced to provide treatment which would be in conflict with their
medical judgement.102 In this respect, the Irish Medical Council provides the
following ethical guidance to its members:103
          -Where death is imminent, it is the responsibility of the doctor to take
          care that the sick person dies with dignity, in comfort, and with as
          little suffering as possible. In these circumstances a doctor is not
          obliged to initiate or maintain treatment which is futile or
          disproportionately burdensome.-
The Commission considers that this guidance deals correctly with a difficult
ethical matter in a manner that is also consistent with existing criminal law on
euthanasia, already discussed.


1.79       Concern was expressed to the Commission during the consultation
process that if a proposed legislative framework for advance care directive
extended only to refusals of medical treatment this may result in the person not
receiving other treatment which they had not specifically refused, particularly if
the person concerned is an older person. The Commission is strongly of the
view that an advance care directive should not be interpreted as involving a
refusal of other forms of medical treatment which are not mentioned in the
advance care directive. Medical treatment should be given to a person unless
that treatment is refused in an advance care directive or if a health professional
considers the treatment to be contrary to good medical practice. Subject to this
caveat, the Commission has concluded that it would not be practical or
appropriate from an ethical perspective to include in the proposed legislative
framework advance care directives which involve a request for treatment.


1.80       Submissions received by the Commission supported a legislative
scheme concerning advance care directives that involve refusals of treatment,
but it was noted that it would not be appropriate to provide that an advance care
directive could refuse all types of treatment, such as basic care. The
Commission is in agreement with this basic premise.


1.81        The Commission has, therefore, concluded that the proposed
legislative framework should apply to an advance care directive that involves a
 
102                                                                   th
      Irish Medical Council A Guide to Ethical Conduct and Behaviour (6 ed 2004) at
      paragraph 23.1. BMA -Advance Decisions and Proxy Decision-Making in Medical
      Treatment and Research- (2007), at 5.
103                                                                   th
      Irish Medical Council A Guide to Ethical Conduct and Behaviour (6 ed 2004), at
      paragraph 23.1.
 
 
                                      34
 
refusal of medical treatment, subject to certain conditions. The Commission
discusses the parameters of these conditions in Chapter 3 of this Report. The
Commission recommends that the proposed legislative scheme should draw on
section 24(1) of the English Mental Capacity Act 2005, which defines an
-advance decision- as meaning a decision made by a person of 18 years with
capacity to do so that if -(a) at a later time and in such circumstances as he may
specify, a specified treatment is proposed to be carried out or continued by a
person providing health care for him, and (b) at that time he lacks capacity to
consent to the carrying out or continuation of the treatment, the specified
treatment is not to be carried out or continued.- The Commission also
recommends that the definition in the proposed legislative scheme should also
take account of the definition in advance directive proposed in the Council of
Europe 2009 Draft Recommendation on Principles Concerning Continuing
                                                                    104
Powers of Attorney and Advance Directives for Incapacity,               namely, the
expression of instructions or wishes made by an adult person with capacity
concerning medical care that may arise in the event of his or her incapacity.


1.82       The Commission recommends that the proposed legislative
framework should apply to advance care directives that involve refusal of
treatment, subject to certain conditions to be specified in the legislation. The
Commission also recommends that an advance care directive should be
defined as the expression of instructions or wishes by a person of 18 years with
capacity to do so that, if (a) at a later time and in such circumstances as he or
she may specify, a specified treatment is proposed to be carried out or
continued by a person providing health care for him or her, and (b) at that time
he or she lacks capacity to consent to the carrying out or continuation of the
treatment, the specified treatment is not to be carried out or continued.
(3)       Advance care directives and mental health care


1.83       In the Consultation Paper the Commission pointed out that the scope
of the current project did not extend to advance care directives involving mental
health care. The Commission accepts, of course, that an advance care directive
made in the context of a recurring illness history and the use of effective
medication during previous psychiatric episodes could improve the person"s
adherence to a treatment plan, with its consequent benefits in terms of quality of
life and reduced need for hospitalisation. 105 Nonetheless, the Commission has
concluded that this aspect of advance care directives involves many issues in
addition to those discussed in this Report, and is, therefore, deserving of
separate analysis. This would include the impact of the specific legislative
 
104
      See paragraphs 1.33-1.38, above.
105
      Exworthy -Psychiatric Advance Care Decisions - An Opportunity Missed- (2004)
      Journal of Mental Health Law 129.
 
 
                                      35
 
framework contained in the Mental Health Act 2001, and the developing work of
the Mental Health Commission in this area. For these reasons, the Commission
has concluded that the proposed legislative framework should not apply to
advance care directives involving mental health care, but that this should be
subject to review and separate analysis at a future date.


1.84     The Commission recommends that the proposed legislative
framework should not apply to advance care directives involving mental health
care.
 
 
E          Underlying Rights and Principles


1.85        In this Part, the Commission sets out the general rights and principles
it considers should inform the legislative framework for advance care directives.
These are derived primarily from the discussion of the case law and relevant
international instruments that have been discussed in Part C, above. The
relevant rights and principles are: the right to consent to, and to refuse, medical
treatment; the principle of autonomy in the wider legal and ethical setting; the
rights to privacy and dignity; and a presumption in favour of preserving life in the
interpretation of advance care directives.
(1)        The right to consent to, and to refuse, medical treatment


1.86        It is a well established general principle that a person must consent
to medical treatment. As with many general principles, there are a number of
exceptions to this, such as in a medical emergency where the patient is unable
to communicate and in the case of contagious diseases. As Costello J noted in
his 1986 lecture on the terminally ill, the corollary to the right to consent is the
right to refuse medical treatment.106 Indeed, the general right to refuse medical
treatment was affirmed in Irish law by the Supreme Court decision in In re a
Ward of Court (No 2).107 In the context of advance care directives, the
Commission discusses here the relevance of informed decision making, the
position concerning demands for medical treatment and expressing wishes
concerning treatment.


1.87      There is a rebuttable presumption in law that a person has the
capacity to consent to and to refuse medical treatment.108 Before a person
 
106
      See Costello, -The Terminally Ill -the Law"s Concerns- (1986) 21 Ir Jur 35 at 42.
      See the discussion of the lecture at paragraph 1.41, above.
107
      [1996] 2 IR 79. See paragraphs 1.43-1.48, above.
108
      A presumption of capacity exists at common law, and the Commission has
      recommended that this be placed on a statutory footing: see Report on
      Vulnerable Adults and the Law (LRC 83-2006), paragraphs 2.34 - 2.39, and
      section 6 of the draft Scheme of the Mental Capacity and Guardianship Bill
 
                                       36
 
consents to or refuses medical treatment, he or she must be given all the
necessary medical information about the procedure or the implications of
refusing the treatment. Crucially, the patient must understand the implications of
such a procedure. As Maclean has stated -autonomy requires knowledge and
not information.-109


1.88        Traditionally, medical professionals, in particular doctors, have been
the information givers. In recent years, the prevalence of medical information,
whether in book form or on the internet, has resulted in people learning about
treatment options from non-traditional methods. An informed decision can often
be made by reading such materials. What is important is that a person
understands what they are refusing and what implications will arise. As already
mentioned, in the Ward of Court case, a person has the right to make a decision
that is contrary to medical advice, or to make a decision that may appear
irrational.


1.89      It has been argued that, if the right to refuse medical treatment is
driven by principles of self-determination and autonomy, -the individual should
be allowed to chose how well informed the decision is.- 110 An informed decision
ensures that the person understands the implications of their decision. 111
Medical professionals must not, however, confuse an irrational decision with a
patient who does not understand the implications of refusing treatment.


1.90       In this respect, concern has been expressed that -patients will be
labelled as incompetent simply because they have not chosen the option that
some other person (particularly their doctor) would have chosen.- 112 On this
point, the Commission supports the view expressed in the Supreme Court
 
 
      appended to that Report. Head 1(a) of the Scheme of the Mental Capacity Bill
      2008, published by the Department of Justice, Equality and Law Reform in
      September 2008 (available at www.justice.ie), and which is based on the
      Commission"s 2006 Scheme, proposes the following: -it shall be presumed unless
      the contrary is established that a person has capacity.-
109
      Mclean -Autonomy, Consent and Persuasion- (2006) 13 European Journal of
      Health Law 321, at 326.
110
      Maclean -Advance Directives and the Rocky Waters of Anticipatory Decision-
      Making- [2008] 16 Medical Law Review 1, at 14.
111
      Mclean has argued that this relatively minor infringement on autonomy is justified
      as it gives enhanced security to what can often be -a fundamental life choice-.
      Ibid, at 15.
112
      Morris -Life and Death Situations: -Die my Dear Doctor? That"s the Last Thing I
      Shall Do-- (1996) 3 European Journal of Health Law 9, at 20.
 
 
                                        37
 
decision in In re a Ward of Court (No 2)113 that a person with full mental capacity
is entitled to refuse medical treatment even if this leads to his or her death. 114 As
the Supreme Court has also noted, a person may also refuse treatment for
religious reasons.115 While the State has a general interest in preserving life on
behalf of society, the right to refuse medical treatment does not disappear in
situations where medical treatment can sustain life. 116 In this respect, the law
recognises that a person is entitled to refuse medical treatment even where this
is in conflict with the best available medical advice and is not based on any
objectively rational reasons.


1.91       In other words, a person of full age and capacity is entitled to refuse
medical treatment for their own reasons, even if other people would think that
those reasons were not rational or not based on sound medical principles. This
is consistent with the Commission"s view in its 2006 Report on Vulnerable
Adults and the Law, and which is incorporated into the Government"s Scheme
of a Mental Capacity Bill 2008, that capacity be defined by reference to a
functional approach, in which cognitive understanding of the decision to be
made, rather than outcome, is the key factor. The Commission accordingly
recommends that informed decision making should be a principle that forms
part of the legislative framework on advance care directives. The Commission
also recommends that it should be made clear that a person is entitled to refuse
medical treatment for reasons that appear not to be rational or based on sound
medical principles or for religious reasons.


1.92        The Commission recommends that informed decision making should
be a principle that forms part of the legislative framework on advance care
directives. The Commission also recommends that it should be made clear that
a person is entitled to refuse medical treatment for reasons that appear not to
be rational or based on sound medical principles and to refuse medical
treatment for religious reasons.


1.93       The Commission returns in Chapter 3 to discuss in detail the
application of these principles.117
 
 
 
 
113
      [1996] 2 IR 79.
114
      [1996] 2 IR 79, at 129. See Law Reform Commission Consultation Paper on
      Bioethics: Advance Care Directives (LRC CP 51-2008), at paragraph 2.03.
115
      In re a Ward of Court (No 2) [1996] 2 IR 79, at 160.
116
      Ibid, at 163.
117
      See paragraph 3.66 to 3.70, below.
 
 
                                        38
 
(2)        Autonomy, dignity and privacy
(a)        Autonomy


1.94        The concept of autonomy recognises that a person has a general
right to decide how to live their life. In the context of medical treatment, the
concept of autonomy is consistent with the gradual move from a paternalistic
model in which -doctor knows best- to a more patient-centred approach.118 A
patient"s right to decide on their medical treatment thus gives a patient more
control over their own life. In the English case Re T119 Lord Donaldson MR
noted that:
           -The patient"s interest consists of his right to self-determination - his
           right to live his own life as he wishes even if it would damage his
           health or lead to his premature death.- 120


1.95        It has been argued that the emergence of the concept of autonomy
has eroded the principle of the sanctity of life.121 While the State has an interest
in preserving life, this interest must be balanced against the right of a person to
decide how they live their life. Indeed, the Commission agrees with the view that
the sanctity of life is not necessarily consistent with keeping a person alive at all
costs. Treatment which is excessively burdensome, which is of no medical
benefit, or treatment which is against the clearly stated wishes of the patient,
but which does keep a patient alive, is not consistent with the principle of the
sanctity of life. As Hamilton CJ noted In re a Ward of Court (No 2) 122, the right to
life -includes the right to have nature take its course and to die a natural death.-
A person can choose to decline treatment which has -no curative effect and
which is intended merely to prolong life.- 123
(b)        Rights to privacy and dignity


1.96       The rights to privacy and dignity have been accepted as
constitutional rights under Article 40.3 of the Constitution of Ireland. The courts
 
 
118
      Bagheri -Regulating Medical Futility: Neither Excessive Patient"s Autonomy Nor
      Physician"s Paternalism- (2008) 15 European Journal of Medical Ethics 45 at 48.
119
      [1992] 4 All ER 649.
120
      Ibid at 661.
121
      Keown -The Legal Revolution: From -Sanctity of Life- to -Quality of Life- and
      -Autonomy-- (1998) 14 Journal of Contemporary Health Law and Policy 253, at
      253.
122
      [1996] 2 IR 79.
123
      Ibid, at 124.
 
 
                                       39
 
have recognised that both rights are interlinked as the -nature of the right to
privacy must be seen as to ensure the dignity and freedom of an individual.- 124


1.97        In In re a Ward of Court (No 2) 125 Denham J noted that the 44 year
old woman in that case, who had been in a persistent vegetative state (PVS) for
over 20 years, had a constitutional right to be treated with dignity and that this
right does not disappear when a person becomes incapacitated. The Supreme
Court in that case decided that the insertion of a tube to feed the woman was
intrusive and constituted an interference with the integrity of her body. 126
Denham J also noted that -merely because medical treatment becomes
necessary to sustain life does not mean that the right to privacy is lost.- 127 The
right to privacy and dignity remains while a person is alive and is not dependent
on capacity.


1.98       The Commission agrees with the views expressed in the Ward of
Court case that respect for a person"s treatment preferences is consistent with
their right to privacy and, in the context of decisions at the end of life, is
consistent with the right to a dignified death. This should be reflected in the
Commission"s proposed statutory framework for advance care directives.


1.99      In its 2006 Report on Vulnerable Adults and the Law the Commission
recommended that the proposed mental capacity legislation should include a
guiding principle that due regard be given to a person"s dignity, privacy and
autonomy;128 and the Commission very much welcomes that this has been
incorporated into the Government"s Scheme of a Mental Capacity Bill 2008. The
Commission is equally of the opinion that the principles of autonomy, dignity
and privacy of the individual should form part of the legislative framework for
advance care directives, in the wider context of the Government"s proposed
mental capacity legislation.


1.100      The Commission recommends that the principles of autonomy,
dignity and privacy of the individual should form part of the legislative framework
for advance care directives.
 
 
 
 
124
      Kennedy v Ireland [1987] IR 587, at 592 (Hamilton P).
125
      [1996] 2 IR 79, at 163.
126
      [1996] 2 IR 79, at 124-125 per Hamilton CJ.
127
      Ibid, at 163.
128
      Report on Vulnerable Adults and the Law (LRC 83-2006), paragraph 2.106; and
      section 4(e) of the draft Scheme of a Mental Capacity Bill (Appendix to Report,
      p.171).
 
 
                                       40
 
(3)        Presumption in favour of preserving life in the interpretation of
           advance care directives


1.101      Advance care directives ensure that a person may retain control and
autonomy over future treatment decisions but, as already noted, the right to
autonomy is not absolute. The Commission turns now to discuss whether, if a
doubt exists about the validity or meaning of an advance care directive, this
doubt should be resolved in favour of preserving life. This is, of course, relevant
only in the context of end of life settings.


1.102       In the English case Re T,129 Lord Donaldson MR suggested that,
where there was such a doubt, this should be resolved by a presumption in
favour of life.130 The Commission sees general merit in this approach but also
accepts that it is not free of difficulties. There is the understandable fear that this
approach could be widely used simply to ignore an advance care directive.131 It
has been argued that an alternative way to deal with doubts about the validity or
meaning of an advance care directive is to begin without any presumption one
way or the other but to take into account the fact that the patient has made an
advance care directive. This would take into account that the patient has
engaged with the thought of dying and if he or she wants to die and is an
indication that the patient felt strongly about having his or her wishes and values
respected at the end of life, and that the patient does not in every situation
regard life as preferable to death. The law should then uphold these wishes if at
all possible.132


1.103        The Commission accepts that this might address the potential
problem of using a presumption to ignore an advance care directive, but the
reality is that it does not address the key questions of: what type of doubt is to
be taken into account (and whose doubt) and should the imminence of the end
of life be given some weight?


1.104     The Commission considers that any presumption should not be used
to render inoperative the clear decision of an autonomous person. A bias in
 
 
 
 
129
      [1992] 4 All ER 649.
130
      [1992] 4 All ER 649, at 661 (Lord Donaldson MR).
131
      Michalowski -Advance Refusals of Life-Sustaining Medical Treatment: The
      Refusal of an Absolute Right- (2005) 68 (6) Modern Law Review 958, at 962.
132
      Michalowski -Advance Refusals of Life-Sustaining Medical Treatment: The
      Refusal of an Absolute Right- (2005) 68 (6) Modern Law Review 958, at 962.
 
 
                                        41
 
favour of life should not in itself generate doubts 133 as the making of an advance
care directive is indicative that the maker had strong feelings on the issue. 134 If a
medical professional has doubts as to the validity or meaning of an advance
care directive, he or she must consult with any relevant proxy or proxies135 to
discuss whether such a doubt is applicable. In the absence of an appointed
proxy or proxies, the medical professional should discuss the matter with the
patient"s family and friends. The Commission also considers that a medical
professional should, in such a case, seek a second opinion from a colleague.
Equally, if the family has doubt as to the validity of the advance care directive,
the family must consult with any proxy or proxies and the medical professional.


1.105      If this process is followed, the Commission considers that many
potential situations of conflict will be resolved, as indeed they are at present.
The Commission considers that, if doubt remains after this process, it would
then be appropriate to reflect in the legal framework the implications of refusing
medical treatment where life might be brought to an end. This will be especially
so if an advance care directive appears to involve refusal of life-sustaining
medical treatment. In this respect, assuming the consultative process outlined
has been followed, the Commission has concluded that a presumption in favour
of preserving life would be justified as being consistent with the high value
placed on the constitutional right to life in the hierarchy of rights. 136 The
Commission therefore recommends that if, following an appropriate process of
consultation, a reasonable doubt exists as to the validity or meaning of an
advance care directive, any such doubt must be resolved in favour of preserving
life.


1.106     The Commission recommends that if, following an appropriate
process of consultation, a reasonable doubt exists as to the validity or meaning
of an advance care directive, any such doubt must be resolved in favour of
preserving life.
 
 
 
 
133
      Willmott, White and Howard -Refusing Advance Refusals: Advance Directives
      and Life-Sustaining Medical Treatment- (2006) 30 Melbourne University Law
      Review 211 at 237.
134
      Michalowski -Advance Refusals of Life-Sustaining Medical Treatment: The
      Relativity of an Absolute Right- (2005) 68(6) Medical Law Review 958, at 962.
135
      See the discussion of proxies in paragraphs 2.25-CHAPTER 3E(a).
136
      See In re a Ward of Court (No 2) [1996] 2 IR 79 and, more generally, Kelly"s Irish
                                           th
      Constitution (Hogan and Whyte eds) 4 ed (Lexis Nexis, 2006).
 
 
                                        42
 
2
 
 
 
 
CHAPTER 2            ADVANCE CARE DIRECTIVES, HEALTH CARE
                     PROXIES AND OTHER THIRD PARTIES
 
 
 
 
A         Introduction


2.01       In this chapter the Commission discusses how third parties may often
be involved in the decision-making process on which a person has expressed
his or her wishes in an advance care directive. This arises from the practical
reality that, when the time comes to make a specific medical decision, the
person who has made the advance care directive is not available to give their
views directly. If the advance care directive is a simple -do not resuscitate me in
such an event- this may not be a major issue, but quite often it may not be as
simple or straightforward as this. Hence the need to nominate another person to
make these decisions, often called a health care proxy.


2.02        The Commission discusses the role of a health care proxy in Part D,
below. Before doing so, the Commission discusses the role of two other third
parties. In Part B, the Commission discusses how a health care proxy appointed
by a person with capacity in an advance care directive differs from the
arrangements for the appointment of a personal guardian for a person with
limited or no capacity envisaged in the Government"s Scheme of a Mental
Capacity Bill 2008. The Commission also discusses the role of third parties who
assist a person with limited or no capacity in an informal way. In Part C, the
Commission notes how the proposals in the Scheme of a Mental Capacity Bill
2008 to extend the role of an attorney appointed under the Powers of Attorney
Act 1996 to include health care decisions would complement, though not
supplant the need for, the Commission"s proposals in this Report.
 
 
B         Personal Guardians and Third Party Informal Decision Making


2.03       The Government"s Scheme of a Mental Capacity Bill 2008 envisages
(in line with the recommendations in the Commission"s 2006 Report on
Vulnerable Adults and the Law) two different types of third parties of relevance
to this Report. The first type is a personal guardian appointed by Court to assist
a person with limited or no capacity and the second is a third party who assists
a person with limited or no capacity with informal decision making.
 
 
 
 
                                      43
 
(1)       The role of personal guardians


2.04       Head 6 of the Government"s Scheme of a Mental Capacity Bill 2008
proposes that the Court of Protection (the High Court) may appoint a Personal
Guardian if it has been decided that a person lacks capacity to make decisions
concerning his or her personal welfare. The 2008 Scheme envisages that, as
far as practicable, the personal guardian is an assisted decision maker,
involving the person concerned as much as possible in the decision making
process; where the person involved lacks any capacity, the personal guardian
would be a substitute decision-maker. Head 7 of the 2008 Scheme envisages
that a personal guardian may be directed by the Court to make specific
decisions, which may include decisions regarding the personal welfare of a
person including the giving and refusing of consent to treatment, but Head 11(5)
currently envisages that this would not include life-sustaining medical treatment.
The Commission agrees with this restriction as the personal guardian will not
have been appointed by the person themselves, but by the Court, and so may
be unaware of the wishes of the person.


2.05       The Commission also welcomes the proposed restriction in Head
11(4) of the Scheme of a Mental Capacity Bill 2008 that a personal guardian
may not make a decision which is contrary to a decision made by an attorney
appointed under the Powers of Attorney Act 1996, to which the Commission
returns in Part C, below. In view of the Commission"s recommendations on
advance care directives in this Report, it would complement the restrictions
envisaged in Head 11(4) of the 2008 Scheme if, in any application for the
appointment of a personal guardian, any advance care directive made by the
person who is the subject of the application be brought to the Court"s attention.
In this way the Court could give any necessary direction to ensure that a valid
and applicable advance care directive is followed by the personal guardian.


2.06        The Commission also considers that if a health care proxy has
already been appointed under an advance care directive, the personal guardian
should not be granted powers to make personal welfare decisions which would
conflict with the powers of the health care proxy; after all, the proxy will have
been appointed when the person had capacity and directly expressed a specific
wish. This would also be consistent with one of the guiding principles in the
Scheme of the 2008 Bill that account must be taken of the past and present
wishes of a person. The Commission accordingly recommends that the
existence of any advance care directive, including an advance care directive
involving the appointment of a health care proxy, be brought to the attention of
the Court when it considers the appointment of a personal guardian. The
Commission also recommends that the powers of a personal guardian should
not include any powers which would conflict with any provision in an advance
care directive.
 
 
                                     44
 


2.07       The Commission recommends that the existence of any advance
care directive, including an advance care directive involving the appointment of
a health care proxy, be brought to the attention of the Court when (as envisaged
in the Scheme of a Mental Capacity Bill 2008) it considers the appointment of a
personal guardian. The Commission also recommends that the powers of a
personal guardian should not include any powers which would conflict with any
provision in an advance care directive.
(2)        The role of third parties in informal decision-making


2.08       As already mentioned, the Government"s Scheme of a Mental
Capacity Bill 2008 also envisages a role for a third party who informally assists
a person with limited or no capacity with decision making. In its 2006 Report on
Vulnerable Adults and the Law, the Commission noted that reform of the law on
mental capacity (as now envisaged in the Scheme of the 2008 Bill) should
accommodate informal decision-making where possible. The Commission noted
that, under existing law, where a third party informally assisted a person with
limited or no capacity in a day-to-day decision, such as using that person"s
money to pay for groceries, it might be that the person with limited or no
capacity was incapable of agreeing to this, thus potentially leaving the third
party open to civil (or criminal) liability. The Commission pointed out that this
gap in the law also applied where a third party assisted informally with day-to-
day welfare or health care decisions, such as accompanying the person to a
routine dental appointment and signing a -consent form.- The Commission
pointed out that such a consent form had no legal standing, but that reform of
the law on mental capacity should, in fact, allow for such consent under what is
commonly described as -general authority to act.- 1 The Commission therefore
recommended that such parties (who are likely to include family members,
friends, carers and health care professionals) be protected from liability when
they carry out routine acts to enhance the welfare of a person whom they
reasonably believe may lack capacity to consent. 2 The Commission also
recommended that where a formal decision-making process exists, for example,
an attorney appointed under the Powers of Attorney Act 1996 (discussed in Part
C below), this should take priority over the informal decision-making process.3


2.09        Head 16 of the Government"s Scheme of a Mental Capacity Bill 2008
proposes, as recommended by the Commission, to introduce the concept of a
third party being able to engage in informal decision-making (having a general
authority to act) in the context of the -personal care, health care or treatment- of
 
 
1
      Report on Vulnerable Adults and the Law (LRC 83-2006) at paragraph 2.84-2.85.
2
      Ibid at paragraph 2.88.
3
      Ibid at paragraph 2.86.
 
 
                                      45
 
a person whose decision-making capacity -is in doubt.- The person making the
decisions must take reasonable steps to establish whether the person lacked
the capacity to make the particular decision and that the decision is made in the
best interests of the person whose capacity is in doubt. Where this is done, the
third party does not incur any liability. If expenditure is incurred, Head 16(4)
provides that the third party may reimburse himself or herself out of the money
in the person"s possession.


2.10         Head 17 of the Scheme of the 2008 Bill provides that a third party
may not make a decision which conflicts with a decision made by a personal
guardian or an attorney under an enduring power of attorney (EPA). It also
provides that the third party informal decision-maker may not refuse artificial
life-sustaining medical treatment. The Commission is in agreement with these
                                                           4
limitations, which it also recommended in the 2006 Report. The Commission
remains of the view that only someone appointed by a person while they still
have capacity may refuse life-sustaining treatment. In the absence of such a
person, the Commission considers that only the Court of Care and Protection
(the High Court) designated in the Scheme of the 2008 Bill should have the
power to make such a decision.
 
 
C          Enduring Powers of Attorney


2.11       Under an enduring power of attorney (EPA) made in accordance with
the Powers of Attorney Act 1996 a person with capacity (called the donor) may
appoint a person (called an attorney or donee) to make certain decisions
outlined in the EPA in the event of the donor"s incapacity. The powers conferred
in the EPA become effective only after the person loses capacity and the EPA is
registered in the High Court in accordance with the provisions of the 1996 Act. It
is important, therefore, to note one similarity and three crucial differences
between an EPA and an advance care directive. The key similarity is that in
both cases a person with capacity sets out in advance his or her wishes about
what should be done in the future at a time when he or she no longer has
capacity to indicate his or her wishes. The three crucial differences are: (a) an
EPA must always be in written form; the EPA must always appoint a third party
to carry out his or her wishes; and (c) the EPA is legally effective only after it
has been registered in the High Court. These differences underline the formality
of an EPA in contrast to the relative informality and facilitative aspect associated
with advance care directives.
 
 
 
4
      Report on Vulnerable Adults and the Law (LRC 83-2006), paragraph 2.88 and
      section 9 of the draft Scheme of Mental Capacity Bill at pp.173-4 of the Report.
 
 
 
 
                                       46
 


2.12        The Council of Europe"s 2009 Draft Recommendation on Principles
Concerning Continuing Powers of Attorney and Advance Directives for
Incapacity5 notes that, in some member states an EPA is a preferred alternative
to the need for formal court decisions appointing third party representatives to
act with or on behalf of individuals with limited or no capacity. Such an example
is the appointment of a personal guardian envisaged in the Government"s
Scheme of a Mental Capacity Bill 2008. The draft Recommendation also notes
that legislation concerning vulnerable adults with incapacity (such as the
Powers of Attorney Act 1996 or the Government"s Scheme of a Mental Capacity
Bill 2008) promotes self-determination and autonomy for vulnerable adults with
limited or no capacity. The draft Recommendation recommends that member
states introduce or amend legislation on continuing powers of attorney and
advance directives to ensure conformity with the principles contained in the
draft Recommendation. The Commission concurs with this view and notes that
the Government"s Scheme of a Mental Capacity Bill 2008 already conforms
substantially to the principles in the draft Recommendation.
(1)       Powers under an EPA


2.13       Under the Powers of Attorney Act 1996, an attorney has the power to
make decisions relating to the property, financial and business affairs of the
donor6 or decisions regarding the personal care of the donor. 7 The donor may
limit the power of the attorney under the EPA to cover one aspect only or may
make a more general power. For example, the power may specify that the
attorney has authority to make decisions about property and business affairs
only or general authority to make decisions about property, affairs and personal
care. The Scheme of a Mental Capacity Bill 2008, which will replace the 1996
Act, retains this distinction.


2.14      Under the 1996 Act, an EPA may give the attorney the power -to
make any specified personal care decision or decisions on the donor"s behalf.-
A personal care decision is limited to the following decisions:
        where the donor should live;
        with whom the donor should live;
        whom the donor should see and not see;
        what training or rehabilitation the donor should get;
        the donor"s diet and dress;
 
5
      Available at www.coe.int. See paragraphs 1.35-1.38, above.
6
      Section 6 of Powers of Attorney Act 1996.
7
      Section 6(6) of Powers of Attorney Act 1996.
 
 
                                       47
 
        inspection of the donor"s personal papers;
        housing, social welfare and other benefits for the donor.8


2.15       In its 2006 Report on Vulnerable Adults and the Law, the
Commission recommended that an EPA should be capable of permitting an
attorney to make certain healthcare decisions. 9 Similarly, Principle 3 of the
Council of Europe"s Draft Recommendation on Principles Concerning
Continuing Powers of Attorney and Advance Directives for Incapacity 10 notes
that member states should consider enabling an EPA to cover economic and
financial matters, as well as health, welfare and other personal matters. In line
with this approach, Head 48 of the Scheme of a Mental Capacity Bill 2008
envisages extending the power of an attorney to personal welfare decisions,
which would include a decision on health care which -giving or refusing consent
to the carrying out or continuation of treatment by a person providing health
care for the donor.-11 The Scheme provides, however, that an attorney could not
be empowered to refuse to consent to artificial life-sustaining medical treatment,
consent to organ donation or consent to non-therapeutic sterilisation; these
would be exclusively matters for the High Court.12
(2)       Life-sustaining treatment


2.16      The Commission notes that the Council of Europe"s draft
Recommendation states that EPAs are considered to be -a preferred alternative
to court decisions on representation.- The Commission agrees with this
approach, that decisions relating to healthcare should be made outside a court
setting where a suitable alternative decision-making process is in place. The
Commission notes that as a person must have full capacity when executing an
EPA, he or she should have the power to appoint an attorney concerning all
aspects of his or her healthcare in the event of his or her incapacity, should they
wish to appoint an attorney regarding such decisions.


2.17      The Commission notes the safeguards to protect the donor of the
EPA contained in the 1996 Act (and in the Scheme of the 2008 Bill, which will
replace the 1996 Act). First a person must have capacity when executing an
EPA and the adjudication of capacity is made at the time of execution of the
EPA.13 Second, a solicitor must interview the donor and be satisfied that the
 
8
      Section 4(1) of Powers of Attorney Act 1996.
9
      LRC 83-2006 at 4.32.
10
      Available at www.coe.int. See paragraphs 1.35-1.38, above.
11
      Head 48(3)(iii) of Scheme of Mental Capacity Bill 2008.
12
      Head 48(3)(ii) of Scheme of Mental Capacity Bill 2008, referring to Head 21.
13
      Section 5(2)(d)(iii) of Powers of Attorney Act 1996.
 
                                         48
 
donor understands the effect of making the EPA and that he or she has no
reason to believe that the document is executed as a result of fraud or undue
pressure.14 Third a registered medical practitioner must provide a statement to
the effect that they are satisfied that the donor had the capacity to execute the
EPA.15 Finally, once the donor loses capacity, the EPA is registered in the High
Court.16


2.18       In recognition that a person with capacity has a right to appoint a
person to make health care decisions in the event of his or her incapacity and in
recognition of the safeguards surrounding the appointment of an EPA, the
Commission has concluded that a person with full capacity should have the
power to appoint a donee under an EPA to make decisions on artificial life-
sustaining treatment, organ donation and non-therapeutic sterilisation. This
would serve to promote autonomy which is consistent with the guiding principles
in the Scheme of Mental Capacity Bill 200817 and Principle 3 of the Council of
Europe"s Draft Recommendation on Principles Concerning Continuing Powers
of Attorney and Advance Directives for Incapacity.


2.19       The Commission is of the opinion that, because of the major
implications of refusing life-sustaining treatment or consenting to non-
therapeutic sterilisation or organ donation, the donor should explicitly state his
or her intention to appoint an attorney to make such decisions. Thus the
Commission is of the opinion that there should be a clear distinction between
personal welfare decisions and the very serious implications of refusing life-
sustaining treatment.


2.20       Currently, when a donor completes an EPA under the Enduring
Powers of Attorney Regulations 1996, they must first state that he or she is
granting the attorney to make decisions regarding his or her property and affairs
in the event of their incapacity. The donor may then limit this power, for
example, the donor may state in the EPA that the attorney may not sell his or
her house. The donor is then given the option to outline any personal care
decisions which he or she may wish the attorney to make in the event of his or
her incapacity. The donor may then limit this decision-making power. The
Commission is of the opinion that an option for the donor to grant the attorney
the power to refuse life-sustaining treatment in the event of the donor"s
incapacity must then be contained in the EPA form. Thus, should a donor wish
to grant his or her attorney the power to refuse life-sustaining treatment, a
 
14
      Section 5(2)(d)(ii) of Powers of Attorney Act 1996.
15
      Section 5(2)(d)(iii) of Powers of Attorney Act 1996.
16
      Section 9 of Powers of Attorney Act 1996.
17
      Head 1 of Scheme of Mental Capacity Bill 2008.
 
 
                                         49
 
separate form should be completed by the donor and that this should be
provided for in new Regulations (which are required in any event in views of the
changes proposed in the Scheme of the 2008 Bill and the replacement of the
1996 Act). The donor may then specify the scope of and limits to this power, for
example, the donor could state that while the attorney has the power to refuse
life-sustaining treatment, the attorney may never refuse CPR.


2.21       The Commission considers that extending the power granted under
an EPA to cover all healthcare decisions will enhance the autonomy of the
donor and ensure that healthcare decisions are made by the attorney who is
appointed by the donor under the EPA and not by the court. The Commission is
of the opinion that such decisions can be made by the attorney because of the
safeguards currently in place under the Powers of Attorney Act 1996 and which
are to be retained in the Scheme of a Mental Capacity Bill 2008 which will
replace the 1996 Act. Thus the Commission recommends that the
Government"s Scheme of a Mental Capacity Bill 2008 be extended to provide
that a person may appoint an attorney under an enduring power of attorney
(EPA) to make decisions regarding life-sustaining treatment, organ donation
and non-therapeutic sterilisation, provided that these are expressly provided for
in the EPA.


2.22        The Commission recommends that the Government"s Scheme of a
Mental Capacity Bill 2008 be extended to provide that a person may appoint an
attorney under an enduring power of attorney (EPA) to make decisions
regarding life-sustaining treatment, organ donation and non-therapeutic
sterilisation, provided that these are expressly provided for in the EPA.
(3)       Conflict between EPAs and advance care directives


2.23        The Commission turns to consider the potential for a conflict to arise
where, for whatever reason, a person has both conferred a power of attorney
under the Powers of Attorney Act 1996 and has also made an advance care
directive (with or without the appointment of a health care proxy). In such a
situation, the Commission recommends that, bearing in mind the formalities
attached to the making of an EPA under the 1996 Act, in general the EPA
should take priority over an advance care directive. Where the advance care
directive has been made before the EPA, it should be ordinarily be taken that
the EPA is a clear, later expression, of the person"s wishes and thus should be
given priority. Where an advance care directive is made after an EPA, the
position is more difficult. In such a situation, the Commission recommends that
there should initially be an attempt to resolve any apparent conflict informally,
involving the donee of the enduring power of attorney and the relevant health
care professional, and, where applicable, the health care proxy. In the absence
of agreement between the parties, the Commission recommends that the matter
 
 
 
                                     50
 
should be referred to the High Court (the Court of Care and Protection
envisaged in the Government"s Scheme of a Mental Capacity Bill 2008).


2.24       The Commission recommends that, in general, in the event of a
conflict between the terms of an enduring power of attorney (EPA) executed
under the Powers of Attorney Act 1996 and an advance care directive, the EPA
should take priority over an advance care directive. The Commission also
recommends that, where it appears that a conflict arises between the terms of
an EPA and an advance care directive, there should initially be an attempt to
resolve any apparent conflict informally, involving the donee of the enduring
power of attorney and the relevant health care professional, and, where
applicable, the health care proxy. The Commission also recommends that, in
the absence of agreement between the parties, the matter should be referred to
the High Court for resolution.
 
 
D         Advance care directives and a health care proxy


2.25       As the Commission has noted, an advance care directive is a
statement or expression of wishes by a person with capacity setting out his or
her wishes regarding refusal of treatment.18 This can constitute a fully
completed advance care directive (-I do not wish to have CPR continued after
another stroke-) and, as already mentioned, it marks an important difference
between an advance care directive and an EPA; with an EPA, a third party is
always nominated by the donor to take future decisions. In some instances, of
course, the maker of the advance care directive may choose to appoint a third
party, often known as a health care proxy, who can make the relevant health
care decisions when they actually arise


2.26        The Commission has already noted that the Government"s Scheme
of a Mental Capacity Bill 2008 proposes to introduce the concept of a general
authority for third parties to engage in informal decision-making in respect of
personal care, health care or treatment of a person whose decision-making
capacity is in doubt.19 This would be a welcome development but would be
limited, in effect, to day-to-day health care matters and would not extend to the
range of treatment decisions envisaged by advance care directives.


2.27       Thus, at the day-to-day end of the health care decision-making
spectrum, the provisions on -general authority to act- in the Scheme of the 2008
Bill would provide third parties with an important level of authority to act
legitimately within the law. At the other end of the spectrum, the proposals for
an EPA would allow a person with capacity to appoint a third party with
 
18
      See paragraph 1.82.
19
      Head 16(1) of Scheme of Mental Capacity Bill 2008, discussed above in Part C.
 
 
                                      51
 
extensive powers to act. The Commission considers that an advance care
directive comes in between these two ends of the spectrum and is thus of the
view that provision for the appointment of a health care proxy under an advance
care directive remains, as indicated by the Council of Europe"s draft
Recommendation on Principles Concerning Continuing Powers of Attorney and
Advance Directives for Incapacity, 20 an important aspect of general reform of
the law on mental capacity. In Chapter 3, the Commission discusses in detail
the arrangements for the appointment of a health care proxy in the proposed
legislative framework, including how these may affect the scope of the proxy"s
powers. The Commission completes this Chapter by outlining in general the
different settings in which an advance care directive may arise and how this
affects the extent of the proxy"s proposed role.


2.28       An advance care directive may be created far in advance of the
treatment matters it deals with, or it may be created in acute circumstances,
such as in an accident and emergency unit of a general hospital. Due to these
very different circumstances an advance care directive may sometimes not
even be in writing. The Commission recognises, however, the implications for
the maker of a later refusal of medical treatment. Thus, where a health care
proxy is nominated in an advance care directive a number of safeguards should
be in place to ensure that the wishes of the maker are followed and that
appropriate precautions are in place, especially where life-sustaining treatment
is involved.


2.29        The health care proxy will, of course, be appointed by the maker of
the advance care directive prior to him or her losing capacity, and one
precaution that arises in this respect (and reflects the principle of individual
autonomy) is that it is likely the proxy will be a close friend or relative of the
maker. Due to this close relationship, the proxy can -provide invaluable
information about the patient"s wishes in the event of incapacity and so
supplement the provisions of the living will.- 21 The use of a proxy will also be of
particular importance in the case of unforeseen circumstances. As the maker of
an advance care directive cannot predict all possible scenarios, it has been
suggested that -patients should focus on appointing as a proxy someone they
trust to interpret their stated preferences or extrapolate their statements if
needed.-22
 
 
20
      Available at www.coe.int. See paragraphs 1.35-1.38, above.
21
      Docker "Living Wills" Tolley"s Finance and Law for the Older Client STEP AT
      G1.21.
22
      Lo and Steinbrrok -Resuscitating Advance Directives- (2004) 164 Arch Intern Med
      1501 at 1504.
 
 
                                      52
 


2.30        Another protection of importance is that the Commission has already
recommended that informed decision-making must form the basis for the
proposed legislative framework on advance care directives. 23 In addition, the
Commission recommends that any advance care directive involving refusal of
life-sustaining treatment will have to be in writing and will only be valid if it has
resulted from informed decision-making, which would often involve consulting a
health care professional.24 Thus, makers of advance care directives will
understand the implications of future refusal of such treatment. Because of this,
the Commission considers that a person should have the power to appoint a
proxy to refuse life-sustaining treatment in an advance care directive. As the
Commission discusses later,25 an advance care directive which refuses life-
sustaining treatment must be witnessed, thus the witness will ensure that the
document is not created as a result of undue influence or other external
influences.


2.31      The Commission recommends that a health care proxy may be
appointed under an advance care directive.
 
 
 
 
23
      See paragraphs 1.86-1.92.
24
      See paragraph 3.70.
25
      See paragraph 3.59.
 
 
                                       53
 
 
3
 
 
 
 
CHAPTER 3            THE DETAILED LEGISLATIVE FRAMEWORK FOR
                     ADVANCE CARE DIRECTIVES
 
 
 
 
A         Introduction
 
 


3.01       This Chapter discusses the main elements of the Commission"s
proposed legislative framework for advance care directives. In Part B, the
Commission discusses the need to ensure that the term healthcare professional
is given a wide meaning in the proposed statutory framework. In Part C, the
Commission discusses how the legislative framework should deal with various
health care situations, in particular basic care, palliative care, life-sustaining
treatment, artificial nutrition and hydration (ANH) and -do not resuscitate" (DNR)
orders. Part D sets out the detailed requirements that the Commission
recommends be in place for an advance care directive to be enforceable. In
Part E the Commission discusses the detailed arrangements concerning the
appointment of a health care proxy. In Part F the Commission discusses the
scope of a statutory Code of Practice on Advance Care Directives that would
support the legislative framework.
 
 
B         Healthcare professional


3.02       The Commission has already noted in Chapter 1 that advance care
directives should be seen in the wider context of healthcare planning. An
advance care directive may, quite often, be drafted by a person in conjunction
with a relative or friend. It is equally likely that the maker of an advance care
directive would consult with a health care professional prior to making an
advance care directive, and the Commission would encourage this also
because it would reinforce informed decision-making. The type of professional
person likely to be consulted could include a:
        doctor1
        nurse2
 
 
1
      Regulated by the Medical Practitioners Act 2007.
2
      Regulated by the Nurses Act 1985.
 
 
                                       55
 
         dentist3
         psychologist4
         social care worker5
         social worker,6 or
         religious adviser.


3.03       The Commission notes that a number of healthcare professionals
may be involved in a healthcare decision. These could include a person"s GP, a
consultant, a nurse, a midwife and a religious adviser. The Commission
acknowledges that a senior healthcare professional may have overall
responsibility for a person"s care. While this is the case, this does not prevent
others being involved in the decision-making process concerning the care of the
person concerned. The senior healthcare professional will ordinarily consult
other members of the healthcare team before a decision is made. The
Commission is aware, however, that in an emergency this may not always be
possible.


3.04       Because of the team-based nature of health care today, the
Commission considers that, in the context of encouraging those making
advance care directives to consult with a professional adviser, it would not be
appropriate to restrict this to, say, a doctor.        Thus, the Commission
recommends that the proposed legislative framework should include a very
wide definition of the term -healthcare professional- which reflects the spiritual,
emotional, psychological as well as medical approach to care that is likely to
precede the making of an advance care directive.


3.05      The Commission recommends that the legislative framework for
advance care directives contains a very wide definition of healthcare
professional, which includes those involved in the medical, spiritual, emotional
and psychological care of a person.
 
 
C             Various health care situations and advance care directives


3.06      In this Part, the Commission discusses how the legislative framework
should deal with various health care situations, in particular basic care, palliative
 
 
 
3
      Regulated by the Dentists Act 1985.
4
      Regulated by the Health and Social Care Professionals Act 2005.
5
      Ibid.
6
      Ibid.
 
 
                                       56
 
care, life-sustaining treatment, artificial nutrition and hydration (ANH) and -do
not resuscitate" (DNR) orders.
(1)       Basic Care


3.07        The Commission has already recommended that the proposed
legislative framework should include the general principle that a person has the
right to refuse medical treatment, even if the refusal is based on what appear to
be irrational grounds.7 This general principle and right is, however, not
absolute. In the Consultation Paper, the Commission provisionally
recommended that an advance care directive that directs a refusal of basic care
should not, for reasons of public policy, be enforceable. 8 This view was
supported during the consultation period after the publication of the
Consultation Paper, and the Commission reaffirms that view in this Report. In
the Commission"s view, basic care that is designed to make the patient
comfortable must always be provided. In this respect, the Commission also
agrees with the Law Commission of England and Wales that this limit to the
scope of advance care directives would not involve a significant infringement on
a person"s autonomy.9


3.08        During the consultation process, it was suggested that the
Commission set out a complete definition of basic care in this Report. Because
of rapid developments in health care and medical science, however, such a
complete definition is not desirable in a legislative framework. The Commission
agrees with the British Medical Association that basic care includes, but is not
limited to, warmth, shelter, oral nutrition and hydration and hygiene measures.10
The Commission has therefore concluded that a broad definition of basic care
could be included that will take account of the specific needs of an individual
person. The Commission recommends that the proposed Code of Practice on
Advance Care Directives11 should contain detailed guidance for health care
professionals on what constitutes basic care.


3.09      The Commission recommends that basic care cannot be refused
under an advance care directive. The Commission recommends that basic care
 
7
      See paragraphs 1.86-1.92, above.
8
      Law Reform Commission Consultation Paper on Bioethics: Advance Care
      Directives (LRC CP 51-2008) at paragraph 1.48.
9
      Law Commission of England and Wales Report on Mental Incapacity (No 231
      1995) at paragraph 5.34.
10
      British Medical Association Withholding and Withdrawing Life Prolonging Medical
                   rd
      Treatment (3 ed, 2007), at 15.
11
      See paragraph 3.117-3.120, below.
 
 
                                      57
 
should be defined to include, but is not limited to, warmth, shelter, oral nutrition
and hydration and hygiene measures. The Commission also recommends that
the proposed Code of Practice on Advance Care Directives should contain
detailed guidance for health care professionals on what constitutes basic care.
(2)        Palliative Care


3.10        Palliative care is treatment that manages pain relief and that seeks to
make a patient comfortable rather than to cure an illness. The Commission is
aware that there is some disagreement as to whether palliative care forms part
of basic care. In 1995, the English Law Commission recommended that care
which alleviates severe pain should come within the definition of basic care.12
The Code of Practice made under the English Mental Capacity Act 2005 (which
largely implemented the recommendations made by the Law Commission in
1995) states that care that is -needed to keep a person comfortable- is basic
care.13 However, the Code of Practice does not mention whether pain relief or
palliative care comes within this definition.


3.11        In Singapore, the Advance Medical Directive Act 1996 states that
palliative care must always be provided.14 However, palliative care is defined as
                 (a) -the provision of reasonable medical procedures for the
                     relief of pain, suffering or discomfort; and
                 (b) the reasonable provision of food and water.-


3.12        The Commission is in agreement with the English Law Commission
that a person should be entitled to refuse pain relief because they may prefer to
remain alert. Palliative care, however, encompasses more than just pain relief.
It is about ensuring that the person is comfortable when their illness becomes
terminal. Due to the importance of ensuring that a person dies with dignity and
in the least amount of pain possible, the Commission recommends that
palliative care should be regarded as part of basic care. The Commission also
recommends that the proposed Code of Practice on Advance Care Directives
should include detailed guidance on what constitutes palliative care.


3.13      The Commission recommends that palliative care should be
regarded as part of basic care. The Commission also recommends that the
proposed Code of Practice on Advance Care Directives should include detailed
guidance on what constitutes palliative care.
 
 
12
      Law Commission of England and Wales Report on Mental Incapacity (No 231
      1995), at paragraph 5.34.
13
      Code of Practice-Mental Capacity Act 2005, at paragraph 9.28.
14
      Section 11 Advance Medical Directive Act 1996 (Sing).
 
 
                                      58
 
(3)        Artificial Life-sustaining treatment


3.14       In the Consultation Paper, the Commission noted that many States
have divergent approaches as to whether an advance care directive that
refuses artificial life-sustaining treatment should be enforceable. 15 In England
and Wales, the Mental Capacity Act 2005 defines life-sustaining treatment as
-treatment which in the view of the person providing health care for the person
concerned is necessary to sustain life.-16 The British Medical Association notes
that a patient"s refusal of artificial life-sustaining treatment must be respected.17
Life-prolonging treatment includes -all treatment or procedures that have the
potential to postpone the patient"s death and includes cardiopulmonary
resuscitation, artificial ventilation, specialised treatment for particular conditions
such as chemotherapy or dialysis, antibiotics when given for potentially life-
threatening infection and artificial nutrition and hydration.- 18


3.15        In Queensland, life-sustaining treatment is defined as -health care
intended to sustain or prolong life and that supplants or maintains the operation
of vital bodily functions that are temporarily or permanently incapable of
independent operation.-19 Before a person can refuse life-sustaining treatment,
however, their health must be in decline, the person must have a terminal
illness, be in a persistent vegetative state, be permanently unconscious or have
an illness from which there is no reasonable prospect of recovery. 20 The
advance health directive will also only apply if the adult has no reasonable
prospect of regaining capacity for health matters.21


3.16       In 2006, the Law Reform Commission of Hong Kong defined life-
sustaining treatment as:
           -... any of the treatments which have the potential to postpone the
           patient"s death and includes, for example, cardiopulmonary
           resuscitation, artificial ventilation, blood products, pacemakers,
           vasopressors, specialised treatment for particular conditions such as
 
15
      Law Reform Commission Consultation Paper on Bioethics: Advance Care
      Directives (LRC CP 51-2008), at paragraphs 4.14-4.19.
16
      Section 4(10) of the Mental Capacity Act 2005.
17
      British Medical Association Withholding and Withdrawing Life-Prolonging Medical
                   rd
      Treatment (3 ed., 2007), at 3.
18
      Ibid, at 5.
19
      Section 5A of the Powers of Attorney Act 1998 (Qld).
20
      Section 36(2)(a) of the Powers of Attorney Act 1998 (Qld).
21
      Section 36(2)(c) of the Powers of Attorney Act 1998 (Qld).
 
 
                                        59
 
           chemotherapy or dialysis, antibiotics when given for a potentially life-
           threatening infection, and artificial nutrition and hydration.- 22


3.17        The Commission considers that, consistent with the autonomy
principle,23 a person has the right to refuse medical treatment even if that
treatment leads to death and, therefore, a person can refuse life-sustaining
treatment in an advance care directive. The Commission accepts that, in
general terms, artificial life-sustaining treatment is treatment which in the view of
the person providing health care is necessary to sustain life. The Commission is
of the opinion that to require a person to be suffering from a terminal condition
before they can refuse artificial life-sustaining treatment would be unduly limiting
on a person"s autonomy. The Commission recommends that artificial life-
sustaining treatment may be refused in an advance care directive. The
Commission recommends that an advance care directive can include a refusal
of artificial life-sustaining treatment, that is, treatment which is intended to
sustain or prolong life and that supplants or maintains the operation of vital
bodily functions that are incapable of independent operation. The Commission
accepts, however, that what constitutes artificial life-sustaining treatment in a
specific case depends on the circumstances of a patient"s specific illness. The
Commission therefore recommends that the Code of Practice on Advance Care
Directives should include detailed guidance on the types of treatment that
comes within this general definition of artificial life-sustaining treatment.


3.18       The Commission recommends that an advance care directive may
include a refusal of artificial life-sustaining treatment, that is, treatment which is
intended to sustain or prolong life and that supplants or maintains the operation
of vital bodily functions that are incapable of independent operation. The
Commission also recommends that the proposed Code of Practice on Advance
Care Directives should include detailed guidance on the types of treatment that
come within the definition of artificial life-sustaining treatment.
(a)        Artificial Nutrition and Hydration (ANH)


3.19       The Commission is aware that there has been some debate as to
whether artificial nutrition and hydration (ANH) constitutes life-sustaining
medical treatment. The British Medical Association has defined ANH as:
           -...techniques for providing nutrition and hydration that are used to
           bypass an inability to swallow. It includes the use of a nasogastric
 
 
 
22
      Law Reform Commission of Hong Kong Report on Substitute Decision-Making
      and Advance Directives in Relation to Medical Treatment (2006), at paragraph
      8.53.
23
      See paragraphs 1.94-1.95, above.
 
 
                                       60
 
              tube, percutaneous endoscopic gastrostomy (PEG feeding) and total
              parenteral nutrition.-24
The Law Reform Commission of Hong Kong has defined ANH as -the feeding of
food and water to a person through a tube.-25


3.20       The Commission has already discussed in detail Re Ward of Court
(No 2),26 which involved a woman in a near persistent vegetative state (near
PVS). In the Supreme Court, Hamilton CJ stated that a person has a right to die
a natural death and not to have life artificially maintained. 27 Hamilton CJ went on
to note that feeding through a percutaneous endoscopic gastrostomy tube (PEG
tube) cannot be regarded as a normal means of feeding. 28 Hamilton CJ thus
found, based on the facts of that case, that the treatment was medical treatment
and not merely -medical care.-29 Denham J, in concurring that the provision of
ANH was medical treatment, also found that the medical treatment was invasive
and resulted in a loss of bodily integrity.30


3.21      A debate has thus emerged about whether ANH is medical treatment
or should be treated in the same way as normal food and drink. In its current
Guide to Ethical Conduct and Behaviour, the Irish Medical Council states that:
              -Access to nutrition and hydration remain one of the basic needs of
              human beings, and all reasonable and practical efforts should be
              made to maintain both.-31
 
 
 
 
24                                                                             rd
      BMA Withholding and Withdrawing Life-prolonging Medical Treatment, 3          ed,
      2007 at 15.
25
      Law Reform Commission of Hong Kong Report on Substitute Decision-Making
      and Advance Directives in Relation to Medical Treatment (2006), at paragraph
      8.53.
26
      [1996] 2 IR 79.
27
      Ibid, at 124.
28
      Ibid, at 125.
29
      Ibid.
30
      Ibid, at 158.
31                                                                    th
      Irish Medical Council A Guide to Ethical Conduct and Behaviour (6 ed, 2004), at
      paragraph 22.1.
 
 
                                       61
 
Similarly, Power argues that there is no difference between the ethical
obligations of providing food to a baby or a person with a spinal injury and
providing ANH.32


3.22       It has been suggested that ANH is medical treatment as it requires
medical skill in administering a tube. 33 Comparisons have also been drawn
between ANH and a ventilator.34 Artificial nutrition and hydration becomes
necessary when a problem occurs with the digestive system in the same way
that a respirator becomes necessary to ensuring the flow of oxygen around the
body when lungs are impaired.35


3.23       In the context of advance care directives, the Commission considers
that the focus should be on the specific circumstances of the person. Thus
whether artificial nutrition and hydration is classified as basic care or life-
sustaining treatment will depend upon the circumstances of the case. For
example, for a stroke victim who has temporarily lost the ability to swallow ANH
must be considered as basic care. This type of care is necessary to keep a
person comfortable and is vital to support the body"s defences against
disease.36 Food and water should not become medical treatment merely due to
the process in which it is administered. After all, -food and water do not perform
the same function in the body that medical treatments do.- 37


3.24         Where there is no possibility of recovery or where the administration
of ANH would be considered invasive and providing no real improvement to the
patient, ANH would be considered artificial life-sustaining treatment. In such a
case, ANH is not about improving a person"s condition, but merely sustaining
their life artificially. As Sheperd explained:
              -For people in a permanent vegetative state, tube feeding is less like
              these acts of common decency and more like a ventilator because
              the provision of nutrition and hydration through a PEG tube is not
 
 
32
      Power -Bioethics and the End of Life- (2008) Bar Review 19, at 21.
 
33
      Airedale NHS Trust v Bland [1993] 1 All ER 821, at 836, per Sir Thomas Birgham
      MR.
34
      Ibid at 871, per Lord Goff.
35
      Cantor -The Permanently Unconscious Patient, Non-Feeding and Euthanasia-
      (1989) 15 American Journal of Law and Medicine 381, at 385.
36
      Bopp -Nutrition and Hydration for Patient"s: The Constitutional Aspects- (1988-
      1989) 4 Issues Law and Medicine 3, at 43.
37
      Ibid.
 
 
                                        62
 
          about respecting the body"s integrity or its appearance but solely
          about sustaining life.-38


3.25           The Commission considers that determinations of whether ANH is
artificial life-sustaining treatment or basic care cannot be made without the input
of a medical professional. The Commission recommends that the proposed
Code of Practice on Advance Care Directives should include guidance for
medical professionals and authors of advance care directives for situations in
which ANH will be considered life-sustaining treatment or, as the case may be,
basic care.


3.26          The Commission considers, however, that in the case of an advance
care directive that includes a refusal of ANH it would not be appropriate for a
health care professional to decline to implement the advance care directive
merely where he or she is of the opinion that this would be contrary to the best
interests of the patient or that the health care professional has a conscientious
objection to the withholding of ANH. In deciding whether ANH is basic care or
artificial life-sustaining treatment, the decision should be based on the health
care professional"s medical and professional judgment only.


3.27       The Commission recommends that the proposed Code of Practice on
Advance Care Directives should provide guidance on the circumstances in
which artificial nutrition and hydration (ANH) may be considered to be basic
care and, as the case may be, artificial life-sustaining treatment. In deciding
whether ANH is basic care or artificial life-sustaining treatment, the decision
should be based on the health care professional"s medical and professional
judgment only.
(b)       Do not Resuscitate Orders


3.28       As noted in the Consultation Paper, cardiopulmonary resuscitation
(CPR) developed in the 1960s to become standard treatment for all patients
who went into cardiac arrest.39 This, in turn, gave rise to the development by
health care professionals, in particular doctors, of -Do Not Resuscitate- (DNR)
orders. A number of studies have been carried out in Ireland on current practice
concerning CPR and DNR Orders,40 but no national DNR guidelines exist to
 
38
      Shepherd -In Respect of People Living in a Permanent Vegetative State and
      Allowing them to Die- (2006) 16 Health Matrix 631, at 681.
39
      Law Reform Commission Consultation Paper Bioethics: Advance Care Directives
      (LRC CP 51-2008), at paragraph 1.40.
40
      Collins -End of Life in ICU - Care of the Dying or -Pulling the Plug"?- (2006) 99(4)
      Irish Medical Journal112; Fennell, Butler, Saaidin and Sheikh -Dissatisfaction with
      Do Not Attempt Resuscitation Orders: A Nationwide Study of Irish Consultant
      Physician Practices- (2006) 99(7) Irish Medical Journal 208.
 
 
                                        63
 
assist either health care professionals or patients on the circumstances in which
a DNR order should be put in place.


3.29       In the Consultation Paper, the Commission invited submissions on
the status of DNR orders.41 Submissions received made it clear that ambiguity
surrounding DNR orders have created real difficulties in health care practice.
Among the problems identified in the Irish studies were that decisions on DNR
orders were taken at too junior a level, that the patient was not included in the
decision-making process and that there was low quality of the DNR
documentation.42 It was also noted that consultants generally favoured
discussing the order with the family of the patient but that they felt that a
discussion with the patient and the family was in line with best practice. 43 The
study found that patients who had a DNR order written on their chart had a
mean age of 76 years,44 thus indicating that older people are much more likely
to be subject to a DNR order. Another study also found that doctors are less
comfortable discussing DNR orders with patients than other forms of medical
treatment,45 with 43% of consultants almost never discussing resuscitation
preferences in advance with a patient.46


3.30        As the Commission has already noted, a person cannot demand
specific forms of treatment, so that a doctor is under no obligation to administer
CPR if he or she does not think that it is medically appropriate. The Commission
notes that, on the basis of the Irish studies mentioned, a DNR decision can be,
and often is, taken by a doctor without consulting the patient concerned. The
Commission considers that decisions about resuscitation should, in general, be
made in advance and form a part of a patient"s care plan. This ensures that,
where possible, the patient is involved in the decision making process. If the
 
 
41
      Law Reform Commission Consultation Paper Bioethics: Advance Care Directives
      (LRC CP 51-2008), at paragraph 1.47.
42
      Robinson and O"Neill -Communication and Documentation of Do-Not-Attempt-
      Resuscitation Orders in an Irish Teaching Hospital- (2005) 11(2) Medico Legal
      Journal of Ireland 60, at 60-61.
43
      Ibid, at 61.
44
      Ibid, at 60.
45
      Sulmasy, Sood and Ury -Physicians Confidence in Discussing Do Not
      Resuscitate Orders with Patients and Surrogates- (2008) 34 Journal of Medical
      Ethics 96, at 99.
46
      Fennell, Butler, Saaidin and Sheikh -Dissatisfaction with Do Not Attempt
      Resuscitation Orders: A Nationwide Study of Irish Consultant Physician
      Practices- (2006) 99(7) Irish Medical Journal 208, at 208.
 
 
                                     64
 
patient does not have the capacity to make this decision, the discussion must
take place with any proxy (if one is appointed). 47 The Commission considers,
however, that before a DNR order is documented, appropriate consultation
must take place with the patient (or their proxy). The Commission recommends
that a decision regarding a DNR order must be made by the senior member of
the health care team available. Such a decision must be documented in the
patient"s medical records. DNR orders must also be reviewed regularly and in
accordance with changes to the patient"s condition.


3.31       There is an obvious lack of clarity on these matters. The
Commission notes that many health care institutions have in place guidelines
on DNR orders. The Commission is of the opinion that national guidelines are
necessary to assist health care professionals, patients and their families. The
Commission recommends that the guidelines on DNR orders should be
included in the statutory Code of Practice. The Commission considers that not
only must assistance from the Medical Council and An Bord Altranais be sought
to ensure that the guidelines conform to their ethical guidelines but that patient
groups have a valuable role to play also. The Commission also recommends
that the guidelines should provide that before a DNR order is made there is a
consultative process, that this is documented on the patient"s chart and that it is
made by the most senior available member of the healthcare team.


3.32       The Commission recommends that the Code of Practice on Advance
Care Directives should contain guidelines on the process of putting in place a
DNR order. The Commission also recommends that the guidelines should
provide that before a DNR order is made there is a consultative process, that
this is documented on the patient"s chart and that it is made by the most senior
available member of the healthcare team.
 
 
D         Detailed requirements for an advance care directive to be
          enforceable


3.33        The Commission has already recommended that the proposed
legislative framework for advance care directives should be facilitative and that
the detailed requirements or formalities required to make an advance care
directive enforceable should be limited. This is to ensure that making an
advance care directive is not unduly burdensome and that, for example, in
some instances an unwritten advance care directive is enforceable. At the same
time, the Commission considers that certain minimum requirements are
required, for example in the case of life-sustaining treatment, to ensure the
protection of vulnerable people. During the consultation period, this general
 
 
 
47
      On proxies, see paragraphs 2.25-CHAPTER 3E(a), above.
 
 
                                      65
 
approach met with broad approval and it forms the basis of the following
discussion of detailed requirements and associated recommendations.


3.34        The Commission discusses the following detailed issues: (1)
unwritten and written advance care directives; (2) witnesses; (3) age (4)
capacity; (5) informed decision-making; (6) specific tests for validity; (7)
applicability to the relevant treatment; (8) revocation; (9) review; and (10) a
register for advance care directives.
(1)        Unwritten and written advance care directives


3.35       In the Consultation Paper the Commission provisionally
recommended that both unwritten and written advance care directives should
be enforceable.48 The Council of Europe"s Draft Recommendation on Principles
Concerning the Legal Protection of Incapable Adults notes that states should
consider whether advance directives should be recorded or made written if they
are intended to have legal status. The Commission will now consider the status
of unwritten advance care directives
(a)        Unwritten advance care directives


3.36        The Commission reiterates that the proposed legislative framework
for advance care directives should be facilitative and, in this respect, it is
important that, subject to exceptions discussed below (notably the situation of
life-sustaining treatment), an unwritten advance care directive can be
enforceable. This is consistent with the Commission"s view that making an
advance care directive should not place an undue burden on individuals.


3.37        The Commission acknowledges that some difficulties exist with
establishing the existence of an unwritten advance care directive - and perhaps
even more so how it might be interpreted. These difficulties may, in some
instances, prove to be intractable. At one extreme, if a spouse or partner of a
patient were to say -he told me last year he would not want to be resuscitated a
third time if this happened,- it would be difficult to suggest that such an asserted
advance care directive should be enforceable under the Commission"s
proposed legislative framework. The Commission notes, however, that this is
not necessarily because the asserted advance care directive is a reported,
unwritten, statement of wishes. Such an advance care directive would also be
prone to difficulty because it was removed in time from the actual health care
decision making to which it might apply and it would not be entirely clear
whether it is applicable to that health care decision. For at least these two
 
 
 
 
48
      Law Reform Commission Consultation Paper on Bioethics: Advance Care
      Directives (LRC CP 51-2008), at paragraph 4.13.
 
 
                                      66
 
reasons, which are applicable equally to a written advance care directive, 49 such
an advance care directive is open to question in terms of enforceability.


3.38        By contrast, where a person has to be brought suddenly to the
Accident and Emergency Department of a hospital, he or she may have thought
in advance of what they would or would not like to happen to them. Such a
person may have created an advance care directive or may not wish to undergo
repeated resuscitation but not communicated this opposition to anyone. Such a
discussion regarding treatment the person may not wish to undergo can be
communicated-and indeed a person should be encouraged to discuss their
wishes-when they are being admitted to hospital. The person may or may not
have a spouse or partner with them and may also state very clearly that the
spouse or partner has full authority to carry out these wishes on their behalf -
the spouse or partner is to be their proxy decision-maker. In the Commission"s
view, these clearly stated wishes, with or without the presence of a partner or
spouse, should be legally enforceable under the proposed legislative scheme
for advance care directives. It may very well be that these unwritten wishes will
be recorded on the person"s medical chart by the health care professional
involved in the admissions procedure and this written record may very well
assist to clarify the scope of the advance care directive, and the role (if any) of a
spouse or partner. In some instances, with the development of suitable
guidance and protocols, it may be that the written record can be regarded as a
written advance care directive.50


3.39       The Commission is of the opinion that health care professionals be
encouraged to discuss what a person"s wishes are and whether a person
wishes to create an advance care directive. This discussion may take place
upon admission or when a person is signing a consent form. Indeed best
practice should dictate that hospital forms include information regarding
advance care directives. While such forms should not replace the conversation
between a patient and health care professional, the Commission recognises the
time constraints that can occur in a medical emergency thus the information
forms can be useful. However, replacing the conversation on advance care
directives with the forms should only be used in limited circumstances, as good
communication between health care professionals and patients is part of good
health care.


3.40       Accordingly, the Commission recommends that, subject to certain
exceptions discussed below (notably the situation of life-sustaining treatment),
an unwritten advance care directive is enforceable under the proposed statutory
framework. The Commission also recommends that the proposed Code of
 
49
      See paragraphs 3.93 (time factors) and 3.86 (applicability rule) below.
50
      See paragraph 3.50, below.
 
 
                                        67
 
Practice on Advance Care Directives should include guidance on the types of
circumstances in which an unwritten advance care directive would be likely to
be enforceable under the proposed statutory framework.


3.41       The Commission recommends that, subject to the situation of life-
sustaining treatment, an unwritten advance care directive is enforceable under
the proposed statutory framework. The Commission also recommends that the
proposed Code of Practice on Advance Care Directives should include
guidance on the types of circumstances in which an unwritten advance care
directive would be likely to be enforceable under the proposed statutory
framework.
(b)       Written advance care directives


3.42      In the Consultation Paper, the Commission provisionally
recommended that an advance care directive that refuses life-sustaining
medical treatment must be in writing. 51 The Commission reaffirms that view in
this Report, primarily because of the implications of refusing such treatment.
The Commission also emphasises again that any reference to -writing- includes
both manual and automated record-keeping processes.


3.43       In keeping with the view that making an advance care directive
should not place an undue burden on individuals, the Commission also
recommends that, where an individual chooses to prepare a written advance
care directive (or is required to do so because it involves life-sustaining
treatment), it need not be in a prescribed form. The Commission recommends,
however, that the written advance care directive must contain some basic
information, such as:
        Name, date of birth and address of the person making the advance
        care directive
        Name and address of the health care proxy (if any), 52 and
        Name and address of the person"s general practitioner or other health
        care professional


3.44       As to the content of a written advance care directive, the Commission
recommends that the proposed Code of Practice on Advance Care Directives
should contain guidance on what should be included in such an advance care
directive. Without being prescriptive on this, the Commission recommends that
enough information should be provided to ensure that it is clear both who made
 
 
51
      Law Reform Commission Consultation Paper on Bioethics: Advance Care
      Directives (LRC CP 51-2008), at paragraph 4.23.
52
      See also paragraph 3.112, below.
 
 
                                         68
 
the advance care directive and the type of health care treatment or treatments
being refused.


3.45        As already mentioned in the context of unwritten advance care
directives,53 an individual may not have made a written advance care directive
but will have clear views as to refusal of certain forms of treatment when a
particular situation arises, such as when admitted to the Accident and
Emergency Department of a hospital or in the period immediately before
surgery. Where an individual communicates their wishes to a health care
professional, that decision is often likely to be recorded in their medical notes
and charts. The Commission considers that, where this occurs, the recorded
medical notes may be regarded as a written advance care directive. It may be
that there is disagreement about whether the recorded information accurately
reflects the individual"s wishes, in particular where the individual has not been
involved in drawing up the written record. The Commission considers that this
difficulty may be overcome in time through the development of good guidance
on the content of advance care directives in the proposed Code of Practice on
Advance Care Directives.


3.46       The Commission also considers that, in keeping with the view that
making an advance care directive should not place an undue burden on
individuals, other clear expressions of wishes should be deemed to be written
advance care directives. These would include, for example, -no blood- cards
which members of the Jehovah"s Witness faith carry to state that they do not
consent to blood transfusions.


3.47       To conclude this section, the Commission accordingly recommends
that an advance care directive that involves a refusal of life-sustaining medical
treatment must be in writing (and that -writing- includes both manual and
automated record-keeping processes). The Commission also recommends that,
where an individual chooses to prepare a written advance care directive (or is
required to do so because it involves life-sustaining treatment), it need not be in
a prescribed form but must contain certain core information, such as: name of
person making the advance care directive, date of birth, address, health care
proxy (if any), and name and address of general practitioner or other health
care professional. The Commission also recommends that the proposed Code
of Practice on Advance Care Directives should contain guidance on what
should be included in the advance care directive. The Commission also
recommends that a refusal of treatment recorded on a person"s medical charts
or notes may be deemed to be a written advance care directive and that a clear
written statement in the form of for example, a -no blood" card is deemed to be
an advance care directive.
 
 
53
      See paragraph 3.36, above.
 
 
                                      69
 


3.48        The Commission recommends that an advance care directive that
involves a refusal of life-sustaining medical treatment must be in writing (and
that "writing" includes both manual and automated record-keeping processes).


3.49        The Commission recommends that, where an individual chooses to
prepare a written advance care directive (or is required to do so because it
involves life-sustaining treatment), it need not be in a prescribed form but must
contain certain core information, such as: name of person making the advance
care directive, date of birth, address, name and address of health care proxy (if
any), and name and address of the person"s general practitioner or other health
care professional. The Commission also recommends that the proposed Code
of Practice on Advance Care Directives should contain guidance on what
should be included in the advance care directive.


3.50       The Commission recommends that a refusal of treatment recorded
on a person"s medical charts or notes may be deemed to be a written advance
care directive and that a clear written statement in the form of for example, a -no
blood" card is deemed to be an advance care directive.
(2)       Witnesses


3.51        A number of legislative frameworks in other States require that an
advance care directive be witnessed by at least one person, but the
Commission notes that such requirements involve considerable variations. In
England, the Mental Capacity Act 2005 stipulates that the advance care
directive must be witnessed by one person in the case of a refusal of life-
sustaining medical treatment only.54 In the Australian Capital Territory and the
Northern Territory, witnesses need only attest to the fact that the person signed
the directive.55 In Queensland, South Australia and Victoria, a witness must
attest to the fact that the individual had the capacity to make the directive. 56


3.52       In the Consultation Paper the Commission noted that there is some
divergence over who the witness should be. The Law Reform Commission of
Hong Kong recommended that one of the witnesses should be a medical
practitioner as they would be able to access the capacity of the author of the
advance care directive and also be able to explain the implications of the
 
 
54
      Section 22(5) of the Mental Capacity Act 2005.
55
      Section 4(2) of the Natural Death Act 1988(NT); regulation 2 of the Natural Death
      Regulations 1989 (NT).
56
      Section 44(4)(b) of the Powers of Attorney Act 1998 (Qld); section 7(2) of the
      Consent to Medical Treatment and Palliative Care Act 1995 (SA); schedule 1 of
      the Consent to Medical Treatment and Palliative Care Regulations 2004 (SA);
      section 5(1) of the Medical Treatment Act 1988 (Vic).
 
 
                                       70
 
advance care directive.57 Similarly, in Singapore one of the witnesses must be a
medical practitioner.58


3.53        The Commission notes the value of requiring that a health care
professional, such as a doctor, witness the signing of the advance care
directive. The health care professional would be in a position to explain the
implications of the advance care directive. The Commission considers,
however, that to require a health care professional to witness the advance care
directive is unduly burdensome on both the author of the advance care directive
and the health care professional. A person may not have established a close
relationship with a health care professional and may prefer a close friend or a
family member to be their witness. A person may also refuse treatment in the
advance care directive which may not be consistent with medical advice.


3.54       The Commission also noted that the Law Reform Commission of
Hong Kong also recommended that neither of the witnesses should have an
interest in the estate of the author of the advance care directive.59 In North
Dakota an advance care directive must either be notarised or signed by two
witnesses, at least one of which may not be:
          -...a health care or long-term care provider providing direct care to
          the principal or an employee of a health care or long-term care
          provider providing direct care to the principal on the date of
          execution... the agent, the principal"s spouse or heir, a person related
          to the principal by blood, marriage or adoption, a person entitled to
          any part of the estate of the principal upon the death of the principal
          under a will or deed in existence or by operation of law, any other
          person who has, at the time of execution, any claims against the
          estate of the principal, a person directly financially responsible for the
          principal"s medical care, or the attending physician of the principal.- 60


3.55     The Commission notes the concern that the witness should not be
someone who will benefit, for example, under the will. Section 82(1) of the
Succession Act 1965 states:
          -If a person attests the execution of a will, and any devise, bequest,
          estate, interest, gift, or appointment, of or affecting any property
 
57
      Hong Kong Law Reform Commission Report on Substitute Decision-Making and
      Advance Directive in Relation to Medical Treatment, at paragraph 8.54- 8.59
58
      Section 3(2) of the Advance Medical Directive Act 1996 (Sing).
59
      Hong Kong Law Reform Commission Report on Substitute Decision-Making and
      Advance Directive in Relation to Medical Treatment, at paragraph 8.59.
60
      ND Cent Code § 23-06.5-05 (2005).
 
 
                                       71
 
          (other than charges and directions for the payment of any debt or
          debts) is given or made by the will to that person or his spouse, that
          devise, bequest, estate, interest, gift, or appointment shall, so far only
          as concerns the person attesting the execution of the will, or the
          spouse of that person, or any person claiming under that person or
          spouse, be utterly null and void.-


3.56       The rationale behind this is to avoid undue influence and coercion
that the witness may exercise over the testator. A similar rationale can be seen
in the specific context of legislation on advance care directives in other States.


3.57      Thus, in Singapore, Section 3(3) of the Advance Medical Directive
Act 1996 states that the witness who is not the medical practitioner must
          -(a) not be a beneficiary under the patients will or any policy of
          insurance;
          (b) have no interest under any instrument which the patient is the
          donor, settler or grantor;
          (c) would not be entitled to an interest in the estate of the patient on
          the patient"s death intestate;
          (d) would not be entitled to an interest in the moneys of the patient
          held in the Central Provident Fund or other provident fund on the
          death of that patient.-


3.58       The Commission has considered the witnessing requirement in
detail. On balance, the Commission has decided not to recommend that there
be a specific category of witnesses. While it is preferable that advance care
directives are witnessed by an independent person, the Commission considers
that to make such a condition mandatory in all situations could result in
rendering advance care directives invalid for what may be, in effect, a technical
error. Such an outcome would not be consistent with the general facilitative
purpose of the proposed legislative framework. In the particular case of an
advance care directive that involves the refusal of life-sustaining treatment, the
Commission has, however, concluded that this should be witnessed by at least
one person. It is likely that this could be a health care professional, such as a
GP, but the Commission does not consider that this should be mandatory.


3.59       The Commission recommends that an advance care directive which
involves the refusal of life-sustaining treatment must be witnessed by at least
one person.
(3)       Age


3.60      In the Consultation Paper the Commission noted that while 18 is
regarded as the age of majority, section 23(1) of the Non-Fatal Offences
Against the Person Act 1997 states that a child aged 16 may consent to medical
 
                                      72
 
treatment.61 The 1997 Act does not, however, expressly state that a child aged
16 may refuse medical treatment. In the Consultation Paper, the Commission
invited submissions on the age a person must be before they can make a valid
advance care directive.62 Since then, the Commission has begun a project
dealing specifically with consent to medical treatment by those under the age of
18,63 on which it intends to publish Consultation Paper by the end of 2009. In
view of this, the Commission proposes to limit its recommendations in this
Report to persons aged 18 years and will address those under 18 years in the
separate project mentioned.


3.61     The Commission recommends that, for the time being, the legislative
framework should apply only to those aged 18 years or more.
(4)       Capacity


3.62       In its 2006 Report on Vulnerable Adults and the Law, the
Commission recommended that there should be a presumption of capacity for
those aged 18 years and over in its proposed general legislative reform of the
law on mental capacity.64 This recommendation was incorporated into the
Government"s Scheme of a Mental Capacity Bill 2008 which proposes that there
be a general presumption of mental capacity for a person aged 18 years of
age.65 The Commission welcomes this presumption and recommends that, to
avoid any doubt, this should expressly apply to the makers of advance care
directives. Thus there would be the rebuttable presumption that the author of
the advance care directive had the capacity to make the directive.


3.63       In Fitzpatrick v FK,66 Laffoy J noted that it would be helpful if
guidelines were published that specifically addressed how capacity to give a
valid refusal to medical treatment is to be assessed. She added that such
guidance should include -the issues which may arise relating to the giving effect
to advance directives to refuse medical treatment.-
 
 
 
61
      Law Reform Commission Consultation Paper Bioethics: Advance Care Directives
      (LRC CP 51-2008), at paragraph 3.37.
62
      Law Reform Commission Consultation Paper Bioethics: Advance Care Directives
      (LRC CP 51-2008), at 3.52.
63
      Third Programme of Law Reform 2008-2014, Project 26.
64
      Law Reform Commission Report Vulnerable Adults and the Law (LRC 83-2006),
      at paragraph 2.39.
65
      Head 1 of Scheme of Mental Capacity Bill 2008.
66
      [2008] IEHC 104 High Court (Laffoy J) 25 April 2008.
 
 
                                       73
 


3.64        The Commission concurs with the view expressed in the Fitzpatrick
case by Laffoy J that guidelines are needed to assist medical professionals
when dealing with the capacity of a person to refuse medical treatment. Head
39 of the Scheme of a Mental Capacity Bill 2008 proposes to give the Office of
Public Guardian the power to create codes. Such codes include, but are not
limited to, guiding health care professionals on the assessment of capacity and
guiding health care professionals and those who can make informal decisions.
The Commission notes that the Scheme of the 2008 Bill envisages that the
Public Guardian must consult with the Health Service Executive, the Mental
Health Commission, the Health Information and Quality Authority and with
representatives of professional bodies in the healthcare sector and healthcare
professionals when drafting codes concerning health care. The Commission
considers that this would also be a suitable consultative process in the context
of the Commission"s proposed Code of Practice on Advance Care Directives.


3.65      The Commission recommends that the rebuttable presumption of
mental capacity in the Government"s Scheme of a Mental Capacity Bill 2008
should expressly apply to the maker of an advance care directive. The
Commission also recommends that the proposed Code of Practice on Advance
Care Directives should include guidance on the approach to the assessment of
the capacity of an individual in this context.
(5)       Informed decision making


3.66       As the Commission has noted in Chapter 1, Informed consent is one
of the most important principles to have developed in medical law in recent
decades. In its 2005 Consultation Paper on Vulnerable Adults and the Law:
Capacity, the Commission noted that if medical treatment is carried out without
informed consent this may be in breach of existing civil liability law, the
Constitution and the European Convention on Human Rights.67 In its current
Guide to Ethical Conduct and Behaviour the Irish Medical Council notes that:
          -Informed consent can only be obtained by a doctor who has
          sufficient training and experience to be able to explain the
          intervention, the risks and benefits and the alternatives. In obtaining
          the consent the doctor must satisfy himself/herself that the patient
          understands what is involved by explaining in appropriate
          terminology. A record of this decision should be made in the patient"s
          notes.-68
 
 
67
      Law Reform Commission Consultation Paper on Vulnerable Adults and the Law:
      Capacity ( LRC CP 37-2005), at paragraph 7.08.
68                                                                    th
      Irish Medical Council A Guide to Ethical Conduct and Behaviour (6 ed 2004), at
      paragraph 17.1.
 
 
                                      74
 
As the Commission has already noted, Denham J in Re a Ward of Court (No
2)69 stated that a person can refuse medical treatment for any reason, rational
or irrational. Similarly in Re MB70 Butler-Sloss LJ stated that a -mentally
competent patient has an absolute right to refuse to consent to medical
treatment for any reason, rational or irrational, or for no reason at all, even
where that decision may lead to his or her own death.- 71 Both Denham J and
Butler-Sloss LJ were silent on whether this right to refuse medical treatment
meant that informed consent was not necessary. The Commission also notes
the views of Munby J in HE v A Hospital NHS Trust 72 that where -life is at
stake, the evidence must be scrutinised with especial care.- 73


3.67        The Commission recognises the value of discussing an advance care
directive with a medical professional. Medical professionals can correct
misunderstandings, thus giving people more realistic insights into their
prognosis.74 The Commission notes that in In re a Ward of Court (No.2)75
Denham J expressly stated that a person is entitled to make an irrational
decision, including one that is in conflict with medical advice. Similarly the
Government"s Scheme of a Mental Capacity Bill 2008 states that -a person is
not to be treated as unable to make a decision merely because he or she
makes an unwise decision.-76 A person"s refusal of medical treatment may be
for personal reasons, and to require that a person must consult with a medical
profession could be unduly burdensome as well as costly. Indeed, as the
Commission noted in the Consultation Paper, requiring that a person consult
with a medical professional could -lead to a tick the box situation and fail to
reflect an individual"s autonomy.-77


3.68    In the Consultation Paper, the Commission provisionally
recommended that a person must consult with a medical professional if their
 
69
      [1996] 2 IR 79.
70
      [1997] 2 Fam Law R 426.
71
      Ibid, at 432.
72
      [2003] 2 FLR 408.
73
      Ibid, at paragraph 24.
74
      La and Steinbrook -Resuscitating Advance Directives- (2004) 164 Arch Intern
      Med 1501.
75
      [1996] 2 IR 97.
76
      Head 1 of Scheme of Mental Capacity Bill 2008.
77
      Law Reform Commission Consultation Paper Bioethics: Advance Care Directives
      (LRC CP 51-2008), at paragraph 3.14.
 
 
                                      75
 
advance care directive involves a refusal of life-sustaining treatment.78 During
the consultation period it was noted that this requirement may be unduly
burdensome on the author of the advance care directive. It could also conflict
with the principle that many people refuse medical treatment for reasons other
than medical, or rational, reasons.79


3.69        The Commission emphasises that informed decision-making should
be encouraged in the context of the proposed legislative framework. 80 Having
considered the submissions received on this, the Commission accepts that the
emphasis should be on ensuring that a person understands what treatment they
are refusing and the implications of that decision,81 not who or where they get
the information from. The important point is that the decision is an informed
decision. Thus, the Commission has concluded that it should recommend that
authors of advance care directives should be encouraged to consult with a
health care professional when making the advance care directive rather than
that this be a mandatory requirement.


3.70       The Commission recommends that makers of advance care
directives should be encouraged to consult with a health care professional. In
the case of advance care directives refusing life-sustaining medical treatment,
the Commission recommends that the decision must be an informed decision.
(6)           Specific requirements for the validity of an advance care
              directive


3.71    In the Consultation Paper the Commission                          provisionally
recommended that an advance care directive will not be valid if:
        -The author of the advance care directive did not have the capacity at
        the time of its creation
        The creation of the advance care directive was not a voluntary act of
        the author
        If the author changed their mind and communicated this change of
        mind
 
78
      Law Reform Commission Consultation Paper Bioethics: Advance Care Directives
      (LRC CP 51-2008), at paragraph 3.15.
79
      As noted by Denham J in Re a Ward of Court (No 2) [1976] 2 IR 79 at 160.
      Similarly in Fitzpatrick v FK, Laffoy J noted that a person may refuse treatment on
      religious grounds. However in that case, Ms K did not have the capacity to make
      such a refusal. [2008] IECH 104.
80
      See paragraph 1.92.
81
      Ibid.
 
 
                                        76
 
        If a written advance care directive refusing life-sustaining medical was
        not witnessed and the person did not consult with a medical
        professional-82


3.72        The Commission recommends that there should be a rebuttable
presumption that a person had the capacity to make an advance care
directive.83 Thus there will be a need for clear and convincing evidence to prove
that the maker of the advance care directive did not have capacity to make the
advance care directive. Such evidence can come from a witness (if one was
present), the health care proxy (if one is appointed) or family and close friends.


3.73       In its 2006 Report on Vulnerable Adults and the Law, the
Commission recommended that a functional test of capacity should be included
in the proposed statutory legislative framework in mental capacity. 84 The result
of this test is that a person may have the capacity to make an advance care
directive which refuses an amputation but may not have the capacity to make
an advance care directive which refuses life-sustaining treatment. If reasonable
doubt exists, however, that the maker of the advance care directive did not have
the capacity to make the advance care directive which refuses life-sustaining
treatment, that doubt must be resolved in favour of preserving life. 85


3.74       An advance care directive which is not the voluntary action of the
maker cannot be valid. In Re T,86 the English Court of Appeal held that a patient
who was 34 weeks pregnant and who had refused a blood transfusion, had
been subjected to the undue influence of her mother, a Jehovah"s Witness. The
court held that the hospital was justified in administering the blood transfusion.
Staughton LJ did warn however that for an advance directive to be invalid, there
must be -such a degree of external influence as to persuade the patient to
depart from her own wishes.-87 The Commission is of the opinion that an
advance directive which is created as a result of undue influence is invalid.


3.75      In Fitzpatrick v FK (No 2),88 Laffoy J stated that before a refusal of
treatment is valid, the refusal must be voluntary. Laffoy J stated that it was
 
82
      Law Reform Commission Consultation Paper Bioethics: Advance Care Directives
      (LRC CP 51-2008), at paragraph 4.40.
83
      See paragraph 3.65.
84
      Report on Vulnerable Adults and the Law (LRC 83-2006), at paragraph 3.23.
85
      See paragraph 1.101-1.106.
86
      [1992] 4 All ER 649.
87
      Ibid, at 669.
88
      [2008] IEHC 104.
 
 
                                      77
 
beyond question that a court or a doctor must be satisfied that a person"s will
was not overbourne to such an extent that the refusal of medical treatment did
not represent -a true decision- of the person. Laffoy J did state that in a
particular case it may be possible that an advance care directive to refuse a
blood transfusion was executed due to peer pressure as a result of membership
of the Jehovah"s Witness Church or fear of social or economic deprivation due
to disfellowship or disassociation. Laffoy J, however, was of the opinion that
such factors would have to be specifically pleaded before the court could give
regard to such factors and that there would have to be evidence that the
decision was not voluntary. While the issue was not raised in this case, Laffoy J
did note that Ms K"s decision was not motivated by fear of economic
deprivation.


3.76      The Commission has recommended that while a person should be
encouraged to consult with a health care professional, this is not obligatory. 89
The Commission notes that informed decision-making should underpin the
proposed legislative framework. However the Commission reiterates its position
that makers of health care directives should be encouraged to discuss their
advance care directives with a health care professional.


3.77      The Commission recommends that an advance care directive will be
valid where
        The author of the advance care directive had capacity at the time of its
        making
        The making of the advance care directive was the voluntary act of the
        author, and
        The maker has not communicated alteration or withdrawal of the
        refusal of treatment contained in the advance care directive.
(7)       The applicability of an advance care directive to specific
          treatment
In the Consultation Paper, the Commission provisionally recommended that an
advance care directive will not be applicable if:
        -It is ambiguous to the proposed treatment
        If all the circumstances outlined in the advance care directive are not
        present
        If, while competent, the author of the advance care directive said or did
        anything which puts reasonable doubt in the mind of the doctor that the
 
 
 
89
      See paragraph 3.70.
 
 
                                     78
 
        author had changed their mind but did not have the opportunity to
        revoke the advance care directive.-90


3.78       Section 24 of the English Mental Capacity Act 2005 states that the
advance decision must related to a -specified treatment.- This treatment,
however, can be expressed in lay terms.91 The Code of Practice for the Mental
Capacity Act 2005 states that when deciding whether the advance care
directive applies to the proposed treatment, health care professionals must
consider:
        -how long ago the advance decision was made, and
        whether there have been changes in the patient"s personal life (for
        example, the person is pregnant, and this was not anticipated when
        they made the advance decision) that might affect the validity of the
        advance decision, and
        whether there have been developments in medical treatment that the
        person did not foresee (for example, new medications, treatment or
        therapies).-92


3.79       The Commission agrees with the approach of the Mental Capacity
Act 2005. Clarity is of utmost importance to ensure that medical professionals
are clear as to what treatment is being refused, thus ensuring that an advance
care directive is not determined to be inapplicable for ambiguity. Therefore, an
advance care directive which stated -I do not want life-sustaining treatment-
would not be -applicable- in this sense because the particular life-sustaining
treatment has not been specified.


3.80       The Commission provisionally recommended in the Consultation
Paper that an advance care directive will be inapplicable if the author of the
advance care directive did or said anything which would put reasonable doubt in
the mind of a doctor that the author had changed his or her mind. The
Commission notes that the Council of Europe"s Draft Recommendation on
Principles Concerning the Legal Protection of Incapable Adults specifies that
member states should take into consideration situations where there is a
substantial change of circumstance. The Commission accepts that a change of
circumstance could render an advance care directive inapplicable. Having
considered submissions received on the limited scope of the provisional
recommendation which referred to -doctor-, the Commission accepts that a
 
90
      Law Reform Commission Consultation Paper Bioethics: Advance Care Directives
      (LRC CP 51-2008), at paragraph 4.43.
91
      Section 24 of Mental Capacity Act 2005.
92
      Code of Practice for Mental Capacity Act 2005, at paragraph 9.43.
 
 
                                       79
 
close relationship that can exist between a patient and other health care
professionals. Thus this proviso should not be limited to doctors but extend to
all health care professionals, as widely defined in this Report.


3.81        The Commission noted in the Consultation Paper that a similar
provision in the English Mental Capacity Act 2005 has been criticised as being
-potentially remarkably expansive.-93 In the Consultation Paper the Commission
discussed HE v A Hospital Trust.94 Although decided before the enactment of
the Mental Capacity Act 2005, it illustrates the potential problem of this section.
In this case, a 24-year-old Jehovah"s Witness, who had been born a Muslim,
required a life-saving blood transfusion. Despite having previously written an
advance directive stating that she refused to consent to a blood transfusion -in
any circumstances,- her father applied to court for the blood transfusion to be
administered. Her father stated that his daughter had recently become engaged
to a Muslim, had promised to convert to that faith and no longer attended
meetings of the Jehovah"s Witness. His daughter also had admitted herself to a
hospital shortly before her collapse and had made no reference to being a
Jehoavh"s Witness and to having objections to blood transfusions. However the
advance directive was only two years old and his daughter had made no
attempt to rescind it.


3.82       Munby J set out the predicament stating that while:
           -...too ready a submission to speculative or merely fanciful doubts will
           rob advance directives of their utility and may condemn those who in
           truth do not want to be treated to what they would see as indignity or
           worse, ...too sceptical a reaction to well-founded suggestions that
           circumstances have changed may turn an advance directive into a
           death warrant for a patient who in truth wants to be treated.- 95


3.83      Munby J however held that -the continuing validity and applicability of
the advance directive must be clearly established by clear and convincing
evidence.- Munby J concluded that in the circumstances the advance directive:
           -...cannot have survived her deliberate, implemented decision to
           abandon that faith and revert to being a Muslim. When the entire
           substratum has gone, and when the very assumption on which the
 
 
 
 
93
       Law Reform Commission Consultation Paper Bioethics: Advance Care Directives
       (LRC CP 51-2008), at paragraph 4.41.
94
       [2003] 2 FLR 408.
95
       Ibid at 415.
 
 
                                      80
 
          advance directive was based has been destroyed by subsequent
          events then...the refusal ceases to be effective.- 96


3.84       Questions arose in submissions made to the Commission during the
consultation process as to what is meant by -reasonable doubt- and by whom
this is determined. The Commission considers that if reasonable doubt exists,
this should be discussed with all individuals involved in the care of the person.
This would include, but not be limited to, doctors, nurses and a proxy (if one has
been appointed). The Commission is concerned that this provision should not
be abused and a high threshold of doubt must be satisfied before the advance
care directive is not followed, as it must be seen as the most authoritative
indication of a person"s wishes. 97 Thus there must be a radical change in
circumstances to render the advance care directive inapplicable. The
Commission accordingly recommends that the Code of Practice provide
guidance to medical profession regarding the circumstances in which
reasonable doubt would render the advance care directive inapplicable. 98


3.85       Section 26(4) of the English Mental Capacity Act 2005 provides that
the Court of Protection has the power to make a declaration as to whether an
advance decision exists, is valid and is applicable to a treatment. The
Commission is of the opinion that if there is uncertainty regarding an advance
care directive, ultimate authority to interpret the advance care directive must
reside with a court. In this respect the Commission also notes that the
Government"s Scheme of a Mental Capacity Bill 2008 proposes to confer
decision-making authority on the High Court, using the proposed title -the Court
of Care and Protection.- While the Scheme of the 2008 Bill also proposes to
confer some jurisdiction on the Circuit Court, the Scheme proposes to reserve
certain decisions to the High Court, including those concerning end of life. The
Commission considers that, in order to ensure that there is consistency in the
context of recommending that the legislative framework on advance care
directives be placed within the Scheme of the 2008 Bill, the High Court would
also be the appropriate court to deal with issues concerning advance care
directives. The Commission accordingly recommends that the High Court be
powered to determine whether an advance care directive exists, whether it is
valid and whether it is applicable to the relevant treatment under consideration.
 
 
 
 
96
      [2003] 2 FLR 408, at 422.
97
      See Maclean -Advance Directives and the Rocky Waters of Anticipatory Decision-
      Making- (2008) 16 (1) Medical Law Review 1 for analysis of this point and HE v
      An Hospital Trust.
98
      See also paragraphs 1.101-1.106.
 
 
                                      81
 


3.86       The Commission recommends that an advance care directive will be
applicable if
        The treatment is the treatment specified in the advance care directive
        All the circumstances outlined are present
        While competent, the author of the advance care directive said or did
        nothing which puts reasonable doubt in the mind of the health care
        professional that the author had changed their mind but did not have
        the opportunity to revoke the advance care directive.
        If the advance care directive is ambiguous, there will be a presumption
        in favour of the preservation of life.


3.87       The Commission recommends that the High Court be empowered to
determine whether an advance care directive exists, whether it is valid and
whether it is applicable to the relevant treatment under consideration.
(8)       Revocation


3.88       In the Consultation Paper, while the Commission provisionally
recommended that certain formalities in the creation of an advance care
directive should apply, the Commission also provisionally recommended that an
informal revocation should be sufficient to revoke the advance care directive.99
The Commission agrees with the view that to require a formal revocation may
mean that -a person is unable to effect change for procedural reasons- thus
depriving a person of their autonomy. 100 The Commission would favour the
approach taken in Singapore that an advance care directive may be revoked in
writing, orally or -in any other way in which the patient can communicate.- 101
The Commission emphasises that the person must, of course, have the
capacity to revoke the advance care directive at the time of revocation.


3.89       The Commission recommends that a competent person can verbally
revoke their advance care directive regardless of whether there is a verbal or
written advance care directive.
(9)       Review


3.90    In the Consultation Paper, the Commission provisionally
recommended that, while an advance care directive should be reviewed
 
 
99
      See Law Reform Commission Consultation Paper Bioethics: Advance Care
      Directives (LRC CP 51-2008), at paragraphs 4.69-4.76.
100
      Maclean -Advance Decisions and the Rocky Waters of Anticipatory Decision-
      Making- [2007] Medical Law Review 1, at 12.
101
      Section 7(1) of the Advance Medical Directive Act 1996 (Singapore).
 
 
                                       82
 
regularly, there should be no specific time limit put on its validity. 102 The
Commission recognises that an advance care directive made 30 years
previously is unlikely to be -applicable- in the sense already discussed and,
more significantly, runs great risks that it does not represent the views of the
person. Nonetheless, the Commission concluded that a specific time limit on an
advance care directive may appear arbitrary.


3.91        The Commission recognises that a person"s treatment preferences
may change over time and that the advance care directive may not be updated
to reflect the changes in their preferences. 103 The Commission also recognises
that an advance care directive created when a person is 25 years of age may
not accurately reflect a person"s preferences when they are 60.


3.92       The Commission remains of the view, however, that to have a
mandatory provision for review would place an undue burden and expense on
the author of an advance care directive. 104 The Commission has concluded that
the appropriate manner to deal with this is in the proposed Code of Practice on
Advance Care Directives, which should contain a recommendation that they are
reviewed regularly. The Commission also recommends that while a lapse of
time will not automatically invalidate the advance care directive, a health care
professional may take into consideration the lapse of time between the creation
of the advance care directive and its activation.


3.93       The Commission recommends that the proposed Code of Practice on
Advance Care Directives should recommend that advance care directives are
reviewed regularly, but that there should be no specific time limit put on the
validity of advance care directives. The Commission also recommends,
however, that a health care professional may take into consideration the lapse
of time between the making of an advance care directive and its activation.
(10)       A register of advance care directives


3.94         The Code of Practice for the English Mental Capacity Act 2005 notes
that it is the responsibility of the author of the advance care directive to ensure
that health professionals are aware of their advance care directive. The code
also recommends that family and friends should be made aware of the advance
 
 
 
102
       Law Reform Commission Consultation Paper Bioethics: Advance Care Directives
       (LRC CP 51-2008), at paragraph 4.84.
103
       Dresser -Precommitment: A Misguided Strategy for Securing Death With Dignity-
       (2003) 81 Texas Law Review 1823, at 1835.
104
       Law Reform Commission Consultation Paper Bioethics: Advance Care Directives
       (LRC CP 51-2008), at paragraph 4.83.
 
 
                                       83
 
care directive.105 The Commission has already noted that many advance care
directives may not be in writing, but agrees that the maker should communicate
their wishes to family, friends and health care professionals. In the United
States of America, when an advance care directive is registered through a
healthcare provider it is stored in the US Living Wills Registry. 106 In Singapore,
an advance care directive must be registered as a health provider is prohibited
from acting on an unregistered directive.107 In Denmark, a physician is obliged
to check the national Living Will Data Bank (Livstestamenteregistret) before life-
prolonging treatment is commenced.108


3.95      The Commission notes that the Department of Health and Children
has been involved in public consultation on a proposed Health Information Bill.
The main purposes of the Bill would be to:
        introduce a Unique Health Identifier;
        support the establishment of population registers;
        clarify the legal and ethical rules on the use and disclosure of health
        care information; and
        define -personal health information- 109
Thus the Bill could include requirements that would be consistent with the
concept of the storage of advance care directives in a register. This central
system could be managed by the proposed Office of Public Guardian or by a
non-statutory body such as the Irish Hospice Foundation. Such a system would
be particularly relevant to written advance care directives. At the time of writing
(September 2009), it remains unclear when the proposed Health Information Bill
will be published or enacted. The Commission considers, nonetheless, that the
principle of establishing a register of advance care directives would be very
much in the interests of all involved, the maker, the health care proxy (if any)
and all health care professionals. In the absence of a Health Information Act
that might include such a register, the Commission considers that it would be
feasible to begin the process of developing a less formal register of advance
care directives, and that suitable guidance on its development could be given in
the proposed Code of Practice on Advance Care Directives.
 
105
      Mental Capacity Act 2005-Code of Practice, at paragraph 9.38.
106
      See www.livingwillregistry.com.
107
      Section 5(3) of the Advance Medical Directive Act 1996 (Singapore).
108
      Section 4 of §26 of the Health Act 2005.
109
      For more on the Health Information Bill see
      http://www.dohc.ie/issues/hib/synopsis.pdf?direct=1
 
 
                                        84
 


3.96      The Commission recommends the establishment of a register of
advance care directives, especially those which must be in writing under the
proposed statutory framework, and that suitable guidance on its development
could be given in the proposed Code of Practice on Advance Care Directives.
 
 
E          Detailed issues concerning the healthcare proxy


3.97       In Chapter 2, the Commission recommended that a person who has
validly made an advance care directive may appoint a health care proxy, a third
party who will make decisions for the maker of the advance care directive. The
healthcare proxy is likely to be a close friend or relative of the advance care
directive. Due to this close relationship, the proxy can -provide invaluable
information about the patient"s wishes in the event of incapacity and so
supplement the provisions of the living will.- 110 A proxy is also of particular use
in the case of unforeseen circumstances. The maker of an advance care
directive cannot predict all possible scenarios. Thus it has been suggested that
-patients should focus on appointing as a proxy someone they trust to interpret
their stated preferences or extrapolate their statements if needed.- 111 In this
Part, therefore, the Commission turns to discuss some detailed elements
concerning the appointment and powers of a health care proxy.
(a)        Powers of the proxy


3.98        It has been argued that the proxy is -not the legally empowered
decision-maker.-112 While the proxy may provide clarity to an advance care
directive, this will depend upon the quality of discussion between the maker of
the advance care directive and the proxy. If the proxy has the power to decide
on medical treatment which is not contained in the advance care directive, the
maker of the advance care directive may not have covered this particular
medical treatment. Thus the proxy will be making a decision based on what they
think the maker of the advance care directive would want rather than what they
actually do want.


3.99       In Queensland, questions were raised about the value of an enduring
power of attorney appointed under a health directive. It was queried how much
clarity an attorney can provide. In other words, is the attorney merely clarifying
 
 
110
      Docker "Living Wills" Tolley"s Finance and Law for the Older Client STEP at
      G1.21.
111
      Lo and Steinbrrok -Resuscitating Advance Directives- (2004) 164 Arch Intern Med
      1501 at 1504.
112
      Docker "Living Wills" Tolley"s Finance and Law for the Older Client STEP, at
      G1.21.
 
 
                                      85
 
the wishes or making their own decision.113 When discussing powers of
attorney, the Scottish Law Commission stated:
          -We tend to think that a better approach is that doctors should be
          obliged to discuss proposed treatment with the patient"s attorney.
          While they should give due weight to the views expressed they
          should not be bound by them. The overall interests of patients would
          be better served by a flexible system in which the professional
          judgment of doctors continues to have a major role.-114


3.100      Under the Code of Practice for the English Mental Capacity Act 2005¸
a person appointed under a lasting (enduring) power of attorney can only
consent to or refuse life-sustaining treatment on behalf of the donor where the
donor has specifically stated that they want the donor to have this authority.115
The Commission considers, however, that due to the importance of promoting
patient autonomy, the proxy must have the power to refuse life-sustaining
medical treatment.


3.101      The Commission is of the opinion that as the proxy is likely to be a
close friend or relative with whom the maker of the advance care directive has
discussed the advance care directive with, they can decide on how much
decision making power the proxy should have. The Commission also notes that
the quality of discussion between the maker of the advance care directive and a
proxy will depend on the relationship between them and also the time available
to have such a discussion.


3.102       The Commission emphasises the important distinction to be drawn
between general or limited powers for a proxy. An advance care directive that
appoints a proxy may confine their decision-making power to certain limited
situations. This may be to ensure that the proxy will provide clarity to the
advance care directive in the case of ambiguities. On the other hand, the proxy
may be given general power to refuse medical treatment, including treatment
which is not stated in the advance care directive. The Commission, however,
notes that due to the serious consequences involved in refusing artificial life-
sustaining medical treatment,116 the advance care directive must explicitly
confer the power to refuse artificial life-sustaining treatment on the proxy.
 
 
113
      Willmott, White and Howard -Refusing Advance Refusals: Advance Directives
      and Life-Sustaining Medical Treatment (2006) 30 Melb. U. L. Rev. 211 at 232.
114
      Scottish Law Commission Mentally Disabled Adults: Legal Arrangements for
      Managing their Welfare and Finances (Discussion Paper No. 94 1991), at 5.116.
115
      Code of Practice-Mental Capacity Act 2005, at paragraph 7.30.
116
       See paragraphs 3.14-3.32.
 
 
                                      86
 


3.103     As there will be times when the health care professional and the
proxy may conflict, the Commission recommends that the proposed Code of
Practice on Advance Care Directives should contain guidance on how this
matter may be resolved.


3.104      The Commission recommends that the maker of an advance care
directive can confer a limited power on the maker of an advance care directive
which can be
        Ensuring that the wishes of the maker of the advance care directive are
        carried out
        Consultation with a health care professional if there is ambiguity in the
        advance care directive


3.105      The Commission recommends that the maker of an advance care
directive can confer a general power to refuse health care decisions on a health
care proxy, except artificial life-sustaining treatment.


3.106      The Commission recommends a health care proxy will not have the
power to refuse artificial life-sustaining treatment unless the advance care
directive explicitly states that the health care proxy has such a power.


3.107    The Commission recommends the proposed Code of Practice on
Advance Care Directives should include guidance on resolving any disputes
between a healthcare proxy and a health care professional.
(2)       Unwritten and written advance care directives


3.108      The Commission has recommended that an advance care directive
can, in general, take an unwritten or written form.117 The Commission notes that
an advance care directive appointing a proxy can be made in the context of
emergency situations. Thus to require such an advance care directive to be
written would be unduly restrictive.


3.109      If, however, an advance care directive that includes the appointment
of a healthcare proxy is written, the Commission recommends that the advance
care directive should include
        Name of the proxy
        Address of the proxy


3.110     An advance care directive which grants the health care proxy the
power to refuse artificial life-sustaining treatment must be contained in a written
advance care directive. The maker of the advance care directive must state
whether the health care proxy has a general power to refuse artificial life-
 
 
117
      See paragraph 3.41.
 
 
                                      87
 
sustaining treatment or whether the powers of the health care proxy are limited
to refusing certain types of artificial life-sustaining treatment only. Thus, the
Commission recommends that due to the serious implications of granting the
health care proxy the power to refuse artificial life-sustaining treatment, the
maker of an advance care directive must explicitly state in a written advance
care directive that they are granting the health care proxy the power to refuse
artificial life-sustaining treatment and outline the scope of that power.


3.111      The Commission recommends that an advance care directive that
includes the appointment of a proxy may be unwritten or written.


3.112      The Commission recommends that the maker of an advance care
directive must explicitly state in a written advance care directive that they are
granting the health care proxy the power to refuse artificial life-sustaining
treatment and outline the scope of that power.


3.113     The Commission recommends that a written advance care directive
appointing a proxy must contain
         Name of the proxy
         Address of the proxy
(3)        Discussion between maker and proxy


3.114      The Commission has recommended that one of the functions of the
proxy is to consult with a health care professional if there is any ambiguity in the
advance care directive. To fulfil this role, the healthcare proxy and the maker of
the advance care directive must discuss the advance care directive in detail.
While the maker of the advance care directive and the proxy cannot foresee all
potential situations, a detailed discussion can ensure that the proxy
understands the advance care directive and help resolve any ambiguity that
could arise in the advance care directive. The Commission notes however that
as many advance care directives appointing a proxy may be made in an
emergency situation, to require a discussion between the proxy and the maker
of an advance care directive to take place before the proxy has been validly
appointed would be unduly burdensome. The Commission therefore
recommends that the maker of the advance care directive and the proxy should
be encouraged to discuss the advance care directive.


3.115      The Commission recommends that the maker of the advance care
directive and the proxy should be encouraged to discuss the advance care
directive.
(4)        Relationship


3.116     Submissions received by the Commission during the consultation
process raised the possibility of preventing those benefiting under a will from
acting as a proxy. While the Commission understands the motivation behind
 
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such a suggestion, the Commission considers that such an exclusion is not
desirable. A proxy who is a close friend or relative of the maker of the advance
care directive is more likely to be comfortable discussing the issues surrounding
an advance care directive with the maker of the advance care directive. The
Commission believes that this discussion is very important in the ensuring that
the proxy understands the advance care directive. Thus the Commission does
not make any recommendation limiting the categories of persons who can and
cannot be a proxy.
 
 
F             Code of Practice


3.117       In the Consultation Paper the Commission recommended drafting a
Code of Practice to complement the statutory framework.118 The Commission is
of the opinion that due to the complex issues involved, such a Code of Practice
is necessary for guidance. The Commission notes that the Code of Practice for
the English Mental Capacity Act 2005 has greatly facilitated the development of
detailed guidance on the general principles in the 2005 Act. The Commission
notes that such a code can respond more quickly than primary legislation to
developments in health care practice. Under the Mental Capacity Act 2005,
failure to follow the Code may be taken into account in any criminal or civil
proceedings.119


3.118      In the 2006 Report on Vulnerable Adults and the Law the
Commission recommended the establishment of an Office of Public Guardian.
One of the functions of the Office would be the preparation of codes of practice
in matters of capacity. 120 The Commission recommended that the Office of
Public Guardian consult with other professional bodies in the development of
such codes of practice.121 The Government"s Scheme of a Mental Capacity Bill
2008 proposes to implement this recommendation and provides that the Office
of Public Guardian would be empowered to issue codes of practice
                   (a) -for the guidance of persons, including healthcare
                       professionals, assessing whether a person has capacity in
                       relation to any matter
 
 
 
118
      Law Reform Commission Consultation Paper Bioethics: Advance Care Directives
      (LRC CP 51-2008), at paragraph 2.48.
119
      Section 42(5) of Mental Capacity Act 2005.
120
      Law Reform Commission Report on Vulnerable Adults and the Law (LRC 83-
      2006), at paragraph 2.60
121
      Ibid.
 
 
                                       89
 
                (b) for the guidance of persons, including health care
                    professionals, assessing whether a person has capacity in
                    relation to any matter
                (c) for the guidance of the enduring powers of attorney
                (d) for the guidance of personal guardians appointed by the
                    court
                (e) for the guidance of health care personnel as respect the
                    circumstances in which urgent treatment may be carried
                    out without the consent of an adult patient who lacks the
                    capacity and what type of treatment may be provided if it is
                    likely that the person will imminently recover capacity
                (f) with respect to other such matters concerned with this
                    Scheme as it thinks fit.-


3.119       The Commission is of the opinion that a multi-disciplinary approach
best suits the formulation of the proposed Code of Practice on Advance Care
Directives. The Commission accordingly recommends that a Code of Practice
on Advance Care Directives should be prepared under the proposed statutory
framework to provide guidance on the creation and execution of advance care
directives. The Commission also recommends that the Code of Practice should
be prepared by the proposed Office of Public Guardian and should be based on
the recommendations of a multi-disciplinary Working Group established for this
purpose by the Office of Public Guardian with input from the Health Service
Executive, the Mental Health Commission and the Health Information and
Quality Authority (HIQA) as envisaged under Head 39 of the Scheme of a
Mental Capacity Bill 2008. The Commission considers that input could also be
sought from, for example, the Medical Council, An Bord Altranais, patients"
groups, the Irish Hospice Foundation and HIQA.


3.120     The Commission recommends that a Code of Practice on Advance
Care Directives should be prepared under the proposed statutory framework to
provide guidance on the creation and execution of advance care directives. The
Commission also recommends that the Code of Practice should be prepared by
the proposed Office of Public Guardian and should be based on the
recommendations of a multi-disciplinary Working Group established for this
purpose by the Office of Public Guardian with input sought from, for example,
the Health Service Executive, the Medical Council, An Bord Altranais, patients"
groups, the Irish Hospice Foundation and HIQA.
 
 
 
 
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4
 
 
 
 
CHAPTER 4            CONSEQUENCES OF ESTABLISHING A
                     STATUTORY FRAMEWORK
 
 
 
 
A          Introduction


4.01        In this chapter the Commission discusses possible consequences
arising out of advance care directives. In Part B the Commission discusses the
implications for healthcare professionals who follow an advance care directive.
Part C focuses on possible consequences for disregarding an advance care
directive, including a discussion of a good faith defence and circumstances in
which a healthcare professional has a conscientious objection to following an
advance care directive. Finally in Part D the Commission makes
recommendations on consequences for healthcare professionals who do not
follow a valid and applicable advance care directive.
 
 
B          Implications for following an advance care directive


4.02        In Chapter 1 the Commission recommended that the proposed
legislative framework on advance care directives does not affect the current law
of homicide under which euthanasia and assisted suicide are criminal offences.
Thus, the Commission"s proposed legislative framework, given these limits,
does not legalise euthanasia or assisted suicide. 1 However, the Commission
acknowledges that this does not prevent a person from refusing life-sustaining
medical treatment in an advance care directive even if it results in death.


4.03        As the Commission has already discussed, 2 in 1986 Costello J,
writing extra-judicially, discussed whether a doctor who turned off a life-support
machine would be found guilty of homicide. 3 Costello J stated that the switching
off of a life-support machine is an act and the failure to switch back on the
machine is an omission.4 It is this omission which would be the cause of death
and Costello J stated that it is -a failure which can properly be regarded as an
 
 
1
      See paragraph 1.73-1.74.
2
      See paragraph 1.41.
3
      Costello -The Terminally Ill-The Law"s Concern- (1986) Irish Jurist 35.
4
      Ibid, at 44.
 
 
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omission.-5 The Supreme Court in In Re a Ward of Court (No 2)6 endorsed the
approach taken by Costello J. Hamilton CJ stated that the case is -not about
euthanasia, if by that is meant the taking of positive action to cause death-. 7


4.04       Thus it would seem that a healthcare professional would not be liable
for following an advance care directive which refuses life-sustaining medical
treatment. The focus of Costello J"s 1986 lecture was on the terminally ill and
thus does not discuss other types of medical treatment. However a healthcare
professional may not administer any medical treatment without the consent of
the person. Thus a healthcare professional may not administer medical
treatment which is refused under an advance care directive. In light of this, the
Commission recommends that, by way of confirming what appears to be the
current law, the legislative scheme should provide that a healthcare
professional will not be held liable for following a valid and applicable advance
care directive.