Community knowledge of law at the end of life: availability and accessibility of web-based resources
Ben White A F , Lindy Willmott A , Cheryl Tilse B , Jill Wilson B , Deborah Lawson C , Angela Pearce D , Jeffrey Dunn E , Joanne F. Aitken E , Rachel Feeney A and Stephanie Jowett AA Australian Centre for Health Law Research, Queensland University of Technology, GPO Box 2434, Brisbane, Qld 4001, Australia. Email: l.willmott@qut.edu.au; rachel.feeney@qut.edu.au; s.jowett@qut.edu.au
B School of Nursing, Midwifery and Social Work, The University of Queensland, Brisbane, Qld 4072, Australia. Email: c.tilse@uq.edu.au; wilsonj@uq.edu.au
C Cancer Council of Victoria, 100 Drummond Street, Carlton, Vic. 3053, Australia. Email: deborah.lawson@cancervic.org.au
D Cancer Council New South Wales, PO Box 572, Kings Cross, NSW 1340, Australia. Email: angelap@nswcc.org.au
E Cancer Council Queensland, PO Box 201, Spring Hill, Qld 4004, Australia. Email: jeffdunn@cancerqldorg.au; JoanneAitken@cancerqldorg.au
F Corresponding author. Email: bp.white@qut.edu.au
Australian Health Review 42(3) 266-271 https://doi.org/10.1071/AH16234
Submitted: 18 October 2016 Accepted: 1 February 2017 Published: 30 March 2017
Abstract
Objective The aim of the present study was to identify online resources community members may access to inform themselves about their legal duties and rights in end-of-life decision making.
Methods Resource mapping identified online resources that members of the public in New South Wales, Victoria and Queensland are likely to identify, and assessed the ease or difficulty in locating them. Resources were then critically analysed for accessibility of language and format using the Patient Education Materials Assessment Tool (PEMAT).
Results Identified resources differed considerably based on whether search terms identified by community members or experts were used. Most resources focused on advance directives, enduring powers of attorney and substitute decision making. Relatively few provided information about legal duties (e.g. powers and responsibilities of substitute decision makers) or resolving conflict with health practitioners. Accessibility (understandability and actionability) of resource content varied.
Conclusions Although numerous resources on end-of-life law are available online, community members may not be able to identify relevant resources or find resource content accessible.
What is known about the topic? Research on participation by patients in decision making about their treatment has focused primarily on medical rather than legal knowledge.
What does this paper add? The present study investigated which online resources community members may access to inform themselves about the law on end-of-life decision making. The resources identified were analysed for ease of location and content accessibility.
What are the implications for practitioners? Authors of online resources on end-of-life decision making should consider whether their resources can be: (1) identified by search terms used by the public; (2) understood by a general audience; and (3) readily used to promote reader action.
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