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A National Framework for Advance Care Directives A National Framework for Advance Care Directives SEPTEMBER 2011 THE CLINICAL, TECHNICAL AND ETHICAL PRINCIPAL COMMITTEE OF THE AUSTRALIAN HEALTH MINISTERS’ ADVISORY COUNCIL Endorsed by the Australian Health Ministers’ Advisory Council at its 4 March 2010 meeting. A National Framework for Advance Care Directives ISBN: 1-74186-804-1 Online ISBN: 1-74186-805-X Publications Number: P3-4802 This report is available online at: www.ahmac.gov.au Copyright Statements: Paper-based publications © Commonwealth of Australia 2010 This work is copyright. Apart from any use as permitted under the Copyright Act 1968, no part may be reproduced by any process without prior written permission from the Commonwealth. Requests and inquiries concerning reproduction and rights should be addressed to the Commonwealth Copyright Administration, Attorney-General’s Department, Robert Garran Offices, National Circuit, Barton ACT 2600 or posted at http://www.ag.gov.au/cca Internet sites © Commonwealth of Australia 2010 This work is copyright. You may download, display, print and reproduce this material in unaltered form only (retaining this notice) for your personal, non-commercial use or use within your organisation. Apart from any use as permitted under the Copyright Act 1968, all other rights are reserved. Requests and inquiries concerning reproduction and rights should be addressed to Commonwealth Copyright Administration, Attorney-General’s Department, Robert Garran Offices, National Circuit, Barton ACT 2600 or posted at http://www.ag.gov.au/cca Suggested citation A National Framework for Advance Care Directives Australian Government Department of Health and Ageing, Canberra 2011. This document, a national framework for Advance Care Directives, was prepared by a Working Group of the Clinical, Technical and Ethical Principal Committee of the Australian Health Ministers’ Advisory Council that advises the Australian Health Ministers’ Conference. The Advance Care Directives Working Group comprised members with backgrounds in: health law; health ethics; health and aged care policy development; and clinical care, including intensive care and palliative care. Copies of A national framework for Advance Care Directives can be downloaded from www.ahmac.gov.au. Copyright © 2011 Advance Care Directives Framework September 2011 Contents 1 Why is a national framework needed? ...................................................................... 1 1.1 What is the purpose of this Framework? ..................................................... 1 1.2 What does this Framework comprise? ........................................................ 2 1.3 Who is the intended audience? ................................................................... 2 1.4 When does this Framework apply? ............................................................. 2 2 What is the context for this Framework? ................................................................... 3 2.1 A short history of Advance Care Directives ................................................. 3 2.2 Advance Care Directives in Australia .......................................................... 4 2.3 Advance Care Directives and advance care planning ................................ 4 2.4 Addressing the challenges .......................................................................... 5 2.5 The Advance Care Directive journey .......................................................... 6 3 Nationally consistent terminology ............................................................................. 8 3.1 Specific terms used in this Framework ....................................................... 8 4 The Code for Ethical Practice for Advance Care Directives .................................... 13 5 The Best Practice Standards for Advance Care Directives ..................................... 15 5.1 Application of the Standards ..................................................................... 15 5.2 Best Practice Standards for substitute decision-making ........................... 16 5.3 Core standards for law and policy ............................................................. 23 5.4 Core standards for guidelines and forms .................................................. 27 5.5 Completing Advance Care Directives ....................................................... 29 5.6 Activating Advance Care Directives .......................................................... 34 5.7 Making decisions under Advance Care Directives .................................... 37 5.8 Problem solving ........................................................................................ 40 Bibliography .......................................................................................................................... 42 Appendix A: Advance Care Directives in Australian legislation ..................................... 47 Appendix B: Advance Care Directives and principles for decision-making ................... 66 Appendix C: Members of the Advance Care Directives Working Group ........................ 68 Abbreviations used in this document ACD Advance Care Directive CPR Cardiopulmonary resuscitation i SDM Substitute decision-maker Advance Care Directives Framework September 2011 ii Advance Care Directives Framework September 2011 1 Why is a national framework needed? Many people fear a loss of autonomy, dignity 1.1 What is the purpose of this and the ability to make their preferences Framework? known when crucial health and other personal decisions are required after they have lost This national Framework combines new decision-making capacity. There is community and existing concepts and is intended to be support for self-determination, particularly in aspirational, that is, it describes the goals for end-of-life matters, and for appointing trusted which policy and practice should aim rather substitute decision-makers (SDM) to convey than reflecting current law and practice preferences when decision-making capacity across Australia. is impaired. The development of this Framework has been Advance Care Directives (ACDs) provide a guided by the following objectives. means for people to plan ahead for these situations. ACDs are not only advance medical • Greater use of advance care planning will directions written by a patient; nor are they assist the community to recognise the limited to end-of-life decision-making. They limits of modern medicine and the role of are life-management documents which people health-promoting palliative care. may complete in home, community, hospital, • Mutual recognition of Advance Care institutional and aged care settings. Often when Directives across all states and territories people complete ACDs, they are not seeking to will be facilitated through harmonisation of control medical treatment decisions, but hoping formats and terminology. to live well and die with dignity in accordance with their personal values. • Growing numbers of Australians will contemplate their future potential loss Although such ACDs are used in all Australian of decision-making capacity, and will states and territories, they take different forms, appreciate the benefits of planning where have different names and, while recognised and how they will live and be cared for, under common law, may be prescribed by and of communicating their future life and legislation. This high level of variability makes it care choices in advance. difficult for one jurisdiction to legally recognise an ACD from elsewhere. A further difficulty has • Advance Care Directives will be well been the lack of case law in Australia to provide established across Australia as a means direction on the legality of an ACD and how an of ensuring that a person’s preferences ACD should be followed in practice. can be known and respected after the loss of decision-making capacity. Australia’s Health Ministers recognise the need for a standardised national format for ACDs • Decisions by substitute decision-makers and have decided that the challenges posed chosen and appointed under Advance by divergent laws and the concerns expressed Care Directives will be respected and will about the use and application of ACDs are best reflect the preferences of the person. addressed by a national policy framework. This • Advance Care Directives will be readily Framework acknowledges the practical and recognised and acted upon with ethical challenges inherent in this undertaking confidence by health and aged care and the diversity of legislation across Australia; professionals, and will be part of routine however it also recognises the potential practice in health, institutional and aged improvements ACDs may make to care and care settings. decision-making during times of impaired capacity, especially towards the end of life. • Clinical care and treatment plans written by health care professionals will be consistent with the person’s expressed values and preferred outcomes of care as recorded in their Advance Care Directive. 1 Advance Care Directives Framework September 2011 1.2 What does this Framework comprise? Policy and legal officers in government departments are encouraged to review their This Framework includes a Code for Ethical policies and laws that establish ACDs in the Practice and a set of Best Practice Standards light of the Code for Ethical Practice and that are designed to work together and are the Best Practice Standards. Government underpinned by nationally agreed terminology. departments are encouraged to check terms • This Framework was developed
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