Associate Professor Jaklin Eliott1, Professor Bernadette Richards1
1University Of Adelaide, Adelaide, Australia
We report findings of a qualitative study exploring perspectives of eight rural and urban lawyers in South Australia regarding the Advance Care Directives (ACD) Act 2013 (SA) (‘Act’) and associated documentation, specifically, a single kit/form intended to guide and capture conversations regarding an individual’s wishes and preferences for (health)care when incapacitated. The Act was informed by the National Framework for Advance Care Planning [ACP] Documents, characterised by a shift from ‘best interests’ approach to one predicated upon individual autonomy, further aiming to support increased awareness and uptake of ACP and completion of ACDs.
Interviews were recorded, transcribed, and thematically analysed. Analysis indicated that many participants drew no meaningful distinction between previous and current legislation and associated legal documents, notably replacing the term ‘substitute decision-maker’ (SDM) with ‘guardian,’ or ‘carer.’ Whilst ACP is recommended for all Australians, lawyers most often introduced this within a trifecta of ‘the Will, Enduring Power of Attorney, and ACDs.’ Thus, ACP was invariably associated with old age, end-of-life, and death. Many dismissed the notion that individuals could write their ACDs, and often redrafted these, typically to increase clarity of instruction. Some altered or deleted specific sections of the ACD form. Most attended only to binding refusals and/or nomination of an SDM, holding that, whilst laudable, inclusion of individual values and/preferences based upon them were at best, irrelevant, or worst, misleading. All critiqued and some side-stepped the required order of signing (SDM first). We conclude that there are significant flaws in the legislation/documentation, suggesting areas for improvement.
Jaklin Eliott is an academic and researcher at the University of Adelaide. She employs qualitative methodologies to examine social and ethical aspects of medical decision-making, typically attending to discrepancies between healthcare policy and clinical practice. Much of her work focuses on the implications of healthcare policy and practice within vulnerable or marginalised individuals or communities.
Bernadette Richards is currently working on the Future Health Technologies Project at the Singapore ETH Centre exploring trustworthy data governance. She is an Adjunct Associate Professor at QUT and Adelaide and President of AABHL. She is a member of the NHMRC’s Australian Health Ethics Committee, the ERLC and Chaired the Mitochondrial Donation Expert Working Committee.