Carers identified?

3.5 Advance directives / statements / care planning

Page last updated: 2010

An exploration of the literature to determine mechanisms for identification indicated that Advanced Directives and Ulysses Agreements have some potential for use in this area.

Advance care planning refers to the process of preparing for likely scenarios and usually includes assessment of, and dialogue about, a person's understanding of their medical history and condition, values, preferences, and personal and family resources. An Advance Directive, sometimes called a 'living will', is a document that describes one's future preferences for medical treatment in anticipation of a time when one is unable to express those preferences because of illness or injury.

Advance Directives are most commonly used in situations towards the end of life. However, there are some anecdotal reports of an increasing use in the mental health area as a means for consumers to have more input into their care at times when they have acute episodes and are considered unfit to make decisions on their own behalf.

They have been used successfully to help people to plan ahead and maintain a degree of autonomy and control during crisis (Diggins, 1993) with beneficial outcomes on rates of hospital admission (Sutherby et al., 1999). They also enable the consumer to nominate people to have control over their affairs. This may enhance the carer's position in decision–making where he or she is nominated.

They have received widespread international support and, in the United States, Advance Directives now have a statutory basis in all 50 States. Three Australian States (Victoria, South Australia and Queensland) and two Territories (the Northern Territory and the Australian Capital Territory) now have legislation which provides for Advance Directives. Although New South Wales, Tasmania and Western Australia do not have similar legislation, Advance Directives may still be valid under common (judge–made) law in these States.

Recommendation 18 of the Australian Government Senate Select Committee on Mental Health (2006) also states:

"That the HREOC be requested to complete its important work on advance directives and protocols that would recognize the rights of consumers to, for instance, identify substitute decision makers, appropriate treatments and other financial, medical and personal decisions, particularly for the care of children."

However, despite their prevalence in the United States, Advance Directives have, in many instances, failed to guide clinical decision–making, and their utility has been questioned. Of particular concern is the dilemma facing clinicians when the AD rules out treatment which the doctor believes is in the patient's best interests. Currently in Australia, mental health legislation can over–ride an Advance Directive.

In the UK, Advance Statements are recommended by the Expert Committee (Department of Health, 1999d), and actively promoted as part of a reformed Mental Health Act by the 60 organisations of the Mental Health Alliance (2003). However, as yet advance statements are not recognised in mental health law in the UK. Prudent professionals may of course choose to state why they have acted against an individual's wishes. Advance statements are recognised in UK case law and healthcare policy and usefully promote consumer values and autonomy. They can also avoid the problem of paternalism associated with best interests.

Families and others often shoulder significant burdens when consumers are acutely psychotic. Reflective discussion in a non–crisis situation can identify options regarding treatment and the role that carers will play. This process, if carried out as part of the development of a relapse prevention plan, would justify the identification of carers and publicly acknowledge their role in future treatment.