Academic journal article Australian Health Review

Uptake and Implementation of Advance Care Planning in Australia: Findings of Key Informant Interviews

Academic journal article Australian Health Review

Uptake and Implementation of Advance Care Planning in Australia: Findings of Key Informant Interviews

Article excerpt

Introduction and aim

Advance Care Planning (ACP) has been defined as a process through which people, in consultation with their family, friends and health professionals, make decisions about their future care in the event of them losing their decision-making capacity.1,2 In addition to discussions, ACP often involves written advance directives (also called the living will) and the appointment of a surrogate decision-maker to make future healthcare decisions for the patient.3ACPhas been gaining prominence in Australia for its role in upholding patient autonomy in decision-making.4-9 The legal function of ACP documents in upholding patient autonomy was confirmed by a recent ruling by the NSW Supreme Court.10 ACP is also seen as an important component of good end-of-life care,1,11,12 as recognised in a recent report by the National Hospitals and Health Reform Commission.9

Despite the increasing importance and attention given to ACP, the literature suggests several problems with ACP. First, ACP remains uncommon in Australia.13-16 Uptake of ACP remains low even in the United States, despite several decades of use and media attention surrounding high profile legal cases.17,18 Second, there are problems in the implementation of advance care plans. Although there have been recent studies demonstrating some improvements,19-21 the problem is that even when ACP takes place, the resultant plans are often not implemented and have a limited effect on the delivery of end-of-life care.22-26 Although several explanations for these problems in uptake and implementation have been suggested in the literature, they have not been confirmed in an Australian context.

This paper helps to address this gap in the literature by presenting the views of expert clinicians and representatives of key stakeholder organisations that were gathered in telephone interviews conducted in 2008. Our previous report of these interviews showed that most participants viewed ACP as a process aimed at enhancing patient autonomy and ensuring good quality care.27 However, there were differences in how this process was conceptualised, with some viewingACPas a process undertaken by patients to define and communicate their treatment preferences, whereas others viewed it as discussions undertaken by health professionals to gain a better understanding of patient's values and goals in order to provide good care. In this paper, we build on those findings by exploring the participants' views on issues relating to uptake of ACP and implementation of advance care plans in Australia. Their views on the underlying reasons behind these issues and their recommendations on appropriate strategies to overcome these problems will also be presented.

Method

The study involved the analysis of transcripts of semi-structured telephone interviews conducted with 23 participants, comprising representatives of various organisations and healthcare professionals with experience and interest in aged care, end-oflife issues and ACP (Box 1). The details of sampling, recruitment and the conduct of interviews (including the interview schedule) have been published previously.27

In addition to exploring howACPis conceptualised in relation to its aims andhowit should be facilitated, the interviews explored the participants' views on the major issues and problems that are affectingACPin Australia, as well as strategies thatmaybe able to address these issues.27 In regard to these issues, analysis of the transcripts revealed that most participants were concerned about the low uptake of ACP, and problems in their implementation.

The coding and analysis of the transcripts were guided by the two above themes, and was informed by the qualitative descriptive method utilising the technique of iterative thematic analysis. 28,29 Constant comparisons of the coded sections of the transcripts with each other and with the emerging themes allowed further refinement of the themes. Memos were used throughout the coding process and analysis to aid in the theoretical development of the themes. …

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