New website makes complex end-of-life medical laws easier to navigate
Does a doctor have to follow the instructions in an advance care directive? Can a dying patient or their family refuse or demand medical treatment needed to keep the patient alive? Can a child with a terminal illness make their own medical treatment decisions?
Laws about medical decision-making underpin the answers to each of these questions, but locating and understanding those laws can be difficult, particularly given that they vary across Australian states and territories.
This month, however, that process got a whole lot easier with the launch of End of Life Law in Australia, a website designed for people who don’t have a legal background, including patients, their families and health professionals.
The website developed by the Australian Centre for Health Law Research (ACHLR), Queensland University of Technology, covers Australian laws relating to advance directives, stopping treatment, palliative care, organ donation and euthanasia.
In addition to an overview of the law and state and territory specific legal information, the website provides a glossary of legal concepts, links to current and published research and summaries of cases which have influenced current legislation.
“This is an Australian first, having a website that addresses the breadth of topics that ours does and that allows comparison of the law across all eight jurisdictions.”
The website was authored by ACHLR directors, Professor Ben White and Professor Lindy Willmott, and ACHLR co-ordinator Penny Neller.
Ms Neller said developing the website highlighted just how complex laws covering these topics are, particularly given inconsistencies between Australian states and territories.
“This is an Australian first, having a website that addresses the breadth of topics that ours does and that allows comparison of the law across all eight jurisdictions,” she said.
The website was created in response to research into doctors’ knowledge of medical law, particularly in regard to end-of-life decision-making which was led by Professors White and Willmott.
“Among doctors who practise in the end-of-life field, there are some significant knowledge gaps about the law on withholding and withdrawing life-sustaining treatment from adults who lack decision-making capacity,” their research paper said.
“Significant consequences for both patients and doctors can flow from failure to comply with the law.”
Ms Neller said preliminary findings from new ACHLR research about community knowledge of the law at end of life also reinforced the need for an accessible resource.
“Initial research undertaken as part of that project indicates that information about the law and patient rights at the end of life might not be easily accessible to the public and so people may not be aware of their rights at the end of life,” she said.
“We thought the website may be a useful tool to assist in clarifying areas of the law relating to end of life, not only for doctors but the community more broadly.”
Ms Neller said the site would be updated to reflect legislative changes and other relevant developments. To subscribe for update notifications email firstname.lastname@example.org
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