Community Knowledge of Law on End-of-life Decision-making: An Australian Telephone Survey

Cheryl Tilse; Jill Wilson; Ben White; Lindy Willmott; Deborah Lawson; Jeffrey Dunn; Joanne F Aitken; Angela Pearce; Michele Ferguson

Community Knowledge of Law on End-of-life Decision-making: An Australian Telephone Survey

J Law Med. 2019 Dec;27(2):399-414.

Authors

Cheryl Tilse¹, Jill Wilson², Ben White³, Lindy Willmott³, Deborah Lawson⁴, Jeffrey Dunn⁵, Joanne F Aitken⁶, Angela Pearce⁷, Michele Ferguson⁸

Affiliations

¹ Honorary Associate Professor, School of Nursing, Midwifery and Social Work, University of Queensland; chief investigator of a four-year interdisciplinary research project entitled "Enhancing Community Knowledge and Engagement with the Law at End-of-life".
² Professor of Social Work, School of Nursing, Midwifery and Social Work, University of Queensland; chief investigator of the "Enhancing Community Knowledge and Engagement with the Law at End-of-life" research project.
³ Professor of Law based at the Australian Centre for Health Law Research in the Faculty of Law at the Queensland University of Technology; chief investigator of the "Enhancing Community Knowledge and Engagement with the Law at End-of-life" research project.
⁴ Legal Policy Officer at Cancer Council Victoria at the time of data collection and analysis; partner investigator of the "Enhancing Community Knowledge and Engagement with the Law at End-of-life" research project.
⁵ Professor and Research Program Director, University of Southern Queensland; Chief Executive Officer of the Queensland Cancer Council at the time of data collection and analysis; partner investigator of the "Enhancing Community Knowledge and Engagement with the Law at End-of-life" research project.
⁶ Professor of Public Health and the Research Manager of Queensland Cancer Council.
⁷ Quality and Evaluation Manager at the New South Wales Cancer Council, Australia at the time of data collection and analysis; partner investigator of the "Enhancing Community Knowledge and Engagement with the Law at End-of-life" research project.
⁸ Senior Research Assistant, Australian Centre for Health Law Research, Queensland University of Technology, at the time of data collection.

PMID: 32129044

Abstract

The law has a clear role to play in supporting patients and their substitute decision-makers (SDMs) to be involved in end-of-life (EOL) decision-making. Although existing literature suggests that knowledge of EOL law is variable among health professionals, there is little information about the extent and sources of such knowledge within the general community. A telephone survey of a representative sample of adults in three Australian States used six case scenarios to examine the extent to which adults know their legal duties, rights and powers as patients or SDMs; the sources from which people derive relevant legal knowledge; experiences of EOL decision-making; and individual characteristics associated with levels of knowledge. The results show considerable variation in levels of legal knowledge dependent primarily of the area of decision-making presented, some sizeable gaps in people's knowledge of EOL law, and varied awareness of how to access appropriate information on this subject. This study points to the need to increase community legal literacy around EOL decision-making, enhance awareness of the role of law in these circumstances and promote the availability of reliable and accessible information on the law at the time when it is needed.

Keywords: community legal knowledge; end-of-life decision-making; end-of-life law; health law; legal literacy.

MeSH terms

Adult
Australia
Decision Making
Humans
Legislation as Topic
Surveys and Questionnaires
Telephone
Terminal Care*