Chapter 13 - Advance Directives

Contributed by Nick O'Neill and current to 30 June 2019

13.1 Introduction

As was discussed in Chapter 11, with the development of the concept of patient autonomy and, in particular, the right to refuse medical treatment came the development of the advance directive. This chapter will concentrate on the development of advance directives in Australia. We focus here on advance care planning as a way of affording autonomy at the end of life, rather than assisted dying, which is beyond the scope of this chapter and only briefly referred to (see also useful reference “End of Life Law in Australia” https://end-of-life.qut.edu.au/).

For some time in Australia it has been part of both State and Commonwealth health policy to encourage and assist people to make advance directives.(1) Advance care planning has been recognized as an important quality of care issue and the promotion of advance care planning has been a priority for the health care sector. This has resulted in major health-wide strategies to encourage communication between health professionals, patients and families about end of life care, to facilitate compassionate and appropriate treatment decisions and fairness and to safeguard both patients and health professionals.(2) In particular, patients with life threatening conditions or increasingly debilitating illnesses are encouraged to express their views about treatment they wish to receive as their physical and mental capacities deteriorate. And further to record those wishes and views in order to use them as the basis for advance care directives and planning. Notably, implementing organisation wide policies and procedures that address the requirements for end-of-life care, including advance care plans, comprise one of the National Safety and Quality Health Service standards introduced by the Australian Commission on Safety and Quality in Health Care.(3)

In regard to the law, there is legislation about a limited form of advance directive in, Queensland, Western Australia and the Australian Capital Territory. In essence it does no more than provide a statutory right to refuse treatment, which is then circumscribed with procedural requirements. However, since this chapter was first published in 2009, South Australia, the Northern Territory (2014) and Victoria (2018) have broadened the scope and the effect of advance directives (advance personal plans). This chapter describes the scope and effect of the legislation itself. It should be noted that in New South Wales advance care directives have been held to be effective by operation of the common law.(4)

New South Wales and Tasmania have not gone down the path of introducing statutory advance directives and so can rely on the common law development of not only the right to refuse treatment, but also the expectation that appropriately drafted advance directives will be recognised and given effect to.

The refusal of treatment legislation Queensland, Western Australia and the Australian Capital Territory states that it does not affect: 1. a right to refuse treatment under any other law - (ACT); 2. the common law recognition of instructions about health care given but not included in an advance health directive - (Qld); 3. the common law relating to a person’s entitlement to make treatment decisions in respect of the person’s future treatment - (WA).(5) It is suggested that these statements preserve the common law. However, since 2014 with the coming into force of the Advance Care Directives Act 2013 (SA) in South Australia and particularly the Advance Personal Planning Act (NT) in the Northern Territory and the Medical Treatment Planning and Decisions Act 2016 (Vic), it is less clear that it is possible to argue that there is no necessary implication that that legislation was intended to replace the common law in those jurisdictions.

Nevertheless, after dealing with the refusal of treatment, the chapter deals with the requirements for advance directives based on the developing common law.

13.2 What are advance directives?

Advance directives are also known as living wills, advance care directives, advance health directives and advance statements. There is no real distinction between them based on these names, although it could be argued that advance health directives and advance statements are particular, narrower forms of advance directives.

Sometimes the term advance directive is used synonymously with the term advance care plan. However, generally, advance care planning is the process, while an advance directive is the formal documentation of this process involving a competent adult. Advance care planning is an ongoing, dynamic discussion between the patient, family members or important others with key health professionals regarding future treatment, usually at the end of life.

13.2.1 Written advance directives

The Alzheimer’s Society in the United Kingdom describes advance directives as written documents intended to be binding refusals of treatment, and that in this form they are often called living wills.(6) This fits in with the tendency in the USA to describe written directives as living wills and to see them as limited to medical treatment at the end of life.(7) The NSW Department of Health defines an advanced care directive as a document that prescribes a person’s future preferences for medical treatment in anticipation of a time when they are unable to express those preferences due to illness or injury.(8) In addition to living wills or “instructional directives”, which usually document specific choices regarding medical interventions in hypothetical situations in the future, there are several other types of advance directives which are less specific in their documentation, including:

1. statements of general values or “a values history” to inform later treatment decisions, by ranking certain states as “worse than death” e.g. particular condition or states the person would find unacceptable should these be result of providing life-sustaining treatment;
2. statements of goals which may provide a bridge between values and wishes; and
3. statements of specific treatment measures or a “treatment directive” which include medical treatment preferences and limitations. These are usually relevant to an existing illness e.g. use of ventilation in someone with respiratory failure.(9)

The British Medical Association distinguishes six types of advance directives, as follows:

1. a requesting statement reflecting an individual’s aspirations;
2. a statement of general beliefs and aspects of life which an individual values;
3. a statement that names another person who should be consulted at the time a decision has to be made;
4. a clear instruction refusing some or all medical procedures;
5. a statement which, rather than refusing any particular treatment, specifies a degree of irreversible deterioration after which no life sustaining treatment should be given; or
6. a combination of the above, including requests, refusals and the nomination of a representative.(10)

In most cases, written advance directives take one of two forms, instructional directives or proxy directives. The United States President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioural Research noted that instruction directives were not necessarily limited to terminal illnesses or to refusal of treatment, but could act as “standing orders” about aspects of the person’s care.(11) While written advance directives are usually limited to medical decision-making after the person has lost capacity to make their own decisions, it is possible that they can relate to other kinds of decisions such as those about where the person is to live or who they want to see or other kinds of personal decisions. This is certainly open in relation to directions, conditions, limitations or exclusions that may be given by their appointors to enduring guardians appointed under the _Guardianship Act 1987 (NSW) and the Guardianship and Administration Act 1995 (Tas).(12)

The purpose of these appointments was for one or more people to have the legal authority either to look after the incapable person, and to be given an allowance to provide for them, or to manage the incapable person’s property and affairs but to be accountable to the Chancery court for doing so. As there was no social security system at the time, these arrangements ensured that wealthy but mentally incapable people were looked after. These arrangements were not available to mentally incapable people who could not afford them. They were entirely reliant on their families, the charity of others or the parish poor house. Too often the mentally ill found themselves confined in prisons with criminals and with other vagrants.(13)

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Notes

1 : Using Advance Care Directives (NSW), NSW Dept of Health, 2005, www.nsw.health.gov.au. Doc GL2005_056 and Guidelines for end of life care & decision-making Doc GL2005_057; Advance Planning for Quality Care at the End of Life and Dignity, Respect and Choice: Planning for End of Life. See also Respecting Patient Choices Program, www.respectingpatientchoices.org.au.

2 : http://www0.health.nsw.gov.au/policies/gl/2005/pdf/GL2005_057.pdf

3 : http://www.achs.org.au/programs-service/-national-safety- and-quality-heath-service-standards- (nsqhss)

4 : Hunter and New England Area Health Service v A [2009] NSWSC 761.

5 : Medical Treatment (Health Directions) Act 2006 (ACT) s 6(1); Powers of Attorney Act 1998 (Qld) s 39 and Guardianship and Administration Act 1990 (WA) s 110ZB.

6 : Alzheimer’s Society Factsheet Future medical treatment: advance statements and advance directives or living wills, www.alzheimers.org.uk. See also Alzheimer’s Australia Position Paper No.5 Legal Planning and Dementia, www.alzheimers.org.au.

7 : See for example, Liang, B A, Health Law and Policy, Boston, Butterworth Heinemann, 2000, 273; Urofsky, op cit (footnote 5) 134.

8 : NSW Department of Health Using advance care directives (NSW) (2005), GL2005- 056.NSW Department of Health: North Sydney: 1.

9 : Ibid. pp 7 and 8. See also, Gillick MR. “The use of advance care planning to guide decisions about artificial nutrition and hydration”. Nutr Clin Pract. (2006) 21(2):126-33.

10 : BMA Consent tool kit, card 9 – Advance statements. See, http//www.bma.org.uk/ap.nsf/Content/Simple+Search+Results+Page?OpenDocument&FreeText=advance%20statements.

11 : United States President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioural Research, Making Health Care Decisions, Washington, US Government Printing Office, 1982, 156-157. See also Alzheimer’s Australia Discussion Paper 8 Decision making in advance: Reducing barriers and improving access to advance directives for people with dementia, May 2006, www.alzheimers.org.au.

12 : Guardianship Act 1987 (NSW) s 6E(3); Guardianship and Administration Act 1993 (SA) s 25(5) and Guardianship and Administration Act 1995 (Tas) s 32(5) and (6).

13 : Kittrie, N. op.cit. 56-61(footnote1); Regan, J. “Protective Services for the Elderly: Commitment, Guardianship, and Alternatives”, (1972) 13 William and Mary Law Review 569, 570-573.

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