Community knowledge of law at the end of life: availability and accessibility of web-based resourcesBen 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 A
A Australian Centre for Health Law Research, Queensland University of Technology, GPO Box 2434, Brisbane, Qld 4001, Australia. Email: email@example.com; firstname.lastname@example.org; email@example.com
C Cancer Council of Victoria, 100 Drummond Street, Carlton, Vic. 3053, Australia. Email: firstname.lastname@example.org
D Cancer Council New South Wales, PO Box 572, Kings Cross, NSW 1340, Australia. Email: email@example.com
F Corresponding author. Email: firstname.lastname@example.org
Australian Health Review - https://doi.org/10.1071/AH16234
Submitted: 18 October 2016 Accepted: 1 February 2017 Published online: 30 March 2017
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.
References Great Britain National Audit Office. End of life care. London: Stationery Office; 2008.
 Public Health Association of Australia (Victorian Branch). Public Health Association of Australia (Victorian Branch) submission to the inquiry into end of life choices. Melbourne: Public Health Association of Australia (Victorian Branch); 2015.
 Willmott L, White BP, Then S-N. Withholding and withdrawing life-sustaining medical treatment. In White BP, McDonald F, Willmott L, editors. Health law in Australia. 2nd edn. Pyrmont: Thomson Reuters; 2014. pp. 543–92.
 New South Wales Department of Health. Conflict resolution in end of life settings (CRELS). Final CRELS Project Working Group report. Sydney: NSW Department of Health; 2010.
 Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 2010; 340 c1345
| The impact of advance care planning on end of life care in elderly patients: randomised controlled trial.CrossRef |
 Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG, Volicer L, Givens JL, Hamel MB. The clinical course of advanced dementia. N Engl J Med 2009; 361 1529–38.
| The clinical course of advanced dementia.CrossRef | 1:CAS:528:DC%2BD1MXht1Okt7rP&md5=6bfcc184dce2e56919041e2a225ca411CAS |
 House of Representatives Standing Committee on Health and Ageing. Thinking ahead: report on the inquiry into dementia: early diagnosis and intervention. Canberra: House of Representatives Standing Committee on Health and Ageing; 2013.
 Productivity Commission. Caring for older Australians: Productivity Commission draft report. Canberra: Productivity Commission; 2010.
 Queensland Law Reform Commission. A review of Queensland’s guardianship laws. Report no 67. Brisbane: Queensland Law Reform Commission; 2010.
 Victorian Law Reform Commission. Guardianship. Final report no. 24. Melbourne: Victorian Law Reform Commission; 2012.
 Edwards S, Fontana A. Legal information needs of older people. Sydney: Law and Justice Foundation of New South Wales; 2004.
 McLennan VE, Boddy JH, Daly MG, Chenoweth LM. Relinquishing or taking control? Community perspectives on barriers and opportunities in advance care planning. Aust Health Rev 2015; 39 528–32.
| Relinquishing or taking control? Community perspectives on barriers and opportunities in advance care planning.CrossRef |
 Brown M, Brooksbank M, Burgess T, Young M, Crawford G. The experience of patients with advanced chronic obstructive pulmonary disease and advance care-planning: a South Australian perspective. J Med 2012; 20 400–9.
 Setterlund D, Tilse C, Wilson J. Older people and substitute decision making legislation: limits to informed choice. Australas J Ageing 2002; 21 128–34.
| Older people and substitute decision making legislation: limits to informed choice.CrossRef |
 Taylor DM, Ugoni A, Cameron P, McNeil J. Advance directives and emergency department patients: ownership rates and perceptions of use. J Intern Med 2003; 33 586–92.
| Advance directives and emergency department patients: ownership rates and perceptions of use.CrossRef |
 Cartwright C, Hughes M, Lienert T. End-of-life care for gay, lesbian, bisexual and transgender people. Cult Health Sex 2012; 14 537–48.
| End-of-life care for gay, lesbian, bisexual and transgender people.CrossRef |
 Hughes M, Cartwright C. Lesbian, gay, bisexual and transgender people’s attitudes to end-of-life decision-making and advance care planning. Australas J Ageing 2015; 34 39–43.
| Lesbian, gay, bisexual and transgender people’s attitudes to end-of-life decision-making and advance care planning.CrossRef |
 Hughes M, Cartwright C. LGBT people’s knowledge of and preparedness to discuss end-of-life care planning options. Health Soc Care Community 2014; 22 545–52.
| LGBT people’s knowledge of and preparedness to discuss end-of-life care planning options.CrossRef |
 Cartwright CM, Williams GM, Steinberg MA, Najman J. Community and health/allied health professionals’ attitudes to euthanasia: what are the driving forces? Report to the National Health and Medical Research Council. Brisbane: School of Population Health, The University of Queensland; 2002.
 Brown M, Fisher J, Brumley D, Ashby M, Milliken J. Advance directives in action in a regional palliative care service: ‘road testing’ the provisions of the Medical Treatment Act 1988 (VIC). J Med 2005; 13 186–90.
 South Australian Advance Directives Review Committee. Advance directives review – planning ahead: your health, your money, your life. Second report of the review of the South Australia’s advance directives – proposals for implementation and communication strategies. Adelaide: Attorney-General’s Department; 2009.
 Boddy J, Chenoweth L, McLennan V, Daly M. It’s just too hard! Australian health care practitioner perspectives on barriers to advance care planning. Aust J Primary Health 2013; 19 38–45.
| It’s just too hard! Australian health care practitioner perspectives on barriers to advance care planning.CrossRef |
 Lawson D, Davoren S. Making the law work better for people affected by cancer. Melbourne: McCabe Centre for Law and Cancer, Cancer Council Victoria; 2013.
 Hawkins H, Cartwright C. Advance health care planning and the GP. Is it time to move forward? Aust Fam Physician 2000; 29 704–7.
| 1:STN:280:DC%2BD3cvktFOmsQ%3D%3D&md5=c1b425c692aa718c1947e81ed6fddd2eCAS |
 Willmott L, White B, Tilse C, Wilson J. Advance health directives: competing perceptions, intentions and use by patients and doctors in Queensland. QUT Law Rev 2013; 13 30–51.
| Advance health directives: competing perceptions, intentions and use by patients and doctors in Queensland.CrossRef |
 Clayton JM, Hancock KM, Butow PN, Tattersall M, Currow DC. Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers. Med J Aust 2007; 186 S77–108.
 Griffiths D. Agreeing on a way forward: management of patient refusal of treatment decisions in Victorian hospitals. PhD thesis, Victoria University, Melbourne; 2008.
 Tilse C, Wilson J, McCawley AL, Willmott L, White BP. Enduring documents: improving the forms, improving the outcomes. Brisbane: The University of Queensland; 2011.
 Australian Commission on Quality and Safety in Health Care (ACSQHC). Patient-centred care: improving quality and safety through partnerships with patients and consumers. Sydney: ACSQHC; 2011.
 Lee K, Hoti K, Hughes JD, Emmerton L. Dr Google and the consumer: a qualitative study exploring the navigational needs and online health information-seeking behaviors of consumers with chronic health conditions. J Med Internet Res 2014; 16 e262
| Dr Google and the consumer: a qualitative study exploring the navigational needs and online health information-seeking behaviors of consumers with chronic health conditions.CrossRef |
 Wolfram D, Spink A, Jansen BJ, Saracevic T. Vox populi: the public searching of the web. J Am Soc Inf Sci Technol 2001; 52 1073–4.
| Vox populi: the public searching of the web.CrossRef |
 Shoemaker SJ, Wolf MS, Brach C. Development of the Patient Education Materials Assessment Tool (PEMAT): a new measure of understandability and actionability for print and audiovisual patient information. Patient Educ Couns 2014; 96 395–403.
| Development of the Patient Education Materials Assessment Tool (PEMAT): a new measure of understandability and actionability for print and audiovisual patient information.CrossRef |