Raising awareness and knowledge amongst health providers, the legal profession and the general community about Advance Care Planning

• People with various health challenges that will potentially reduce their cognitive capacity and their carers
• Doctors, nurses and other health care professionals
• Legal professionals
• Wider community
• Government policy makers and legislators
• Community health support services/advocacy groups
• LGBTI community
• People with dementia and their carers

Each year almost 40,000 Australians lose the ability to make decisions about medical care at the end of their lives. With an ageing population, increasing levels of dementia, medical advances and rising health care costs, there is a need to enhance understanding and use of Advance Care Planning (ACP) for end-of-life medical decisions. ACP involves two legal processes: appointment of a proxy to make medical decisions; and completing an Advance Care Directive (ACD) outlining preferences for medical intervention when a person has lost capacity.

Professor Colleen Cartwright of SCU’s Aged Services Learning and Research Centre (ASLaRC), and her colleagues, uncovered major gaps in doctors’ knowledge of the legal implications of end-of-life decisions, leaving them at risk of serious breaches of the law, including unlawful killing or assault. More than half of New South Wales (NSW) doctors and around one third in Queensland and Victoria incorrectly thought that an Enduring Power of Attorney for finances also conferred health decision-making powers. 46% of NSW doctors were unable to correctly nominate the legally-authorised medical decision-maker for a person without capacity and 25% reported that they would not follow an ACD, which is an unlawful act. Specialists in three states scored a mean of 2.97 out of 6.0 on knowledge of State-specific law, and more than 70% gave primacy to ‘other factors’ over legally-binding ACP documents.

As a result of this research, the Royal Australian College of General Practitioners established two Working Parties on ACP (2011-13) and invited Professor Cartwright to participate. The first Working Party developed an Advance Care Planning Position Statement (2012) which strongly emphasised self-determination, dignity and avoidance of suffering, and noted “decisions need to be patient-centred and not disease focused.” It urged doctors to promote ACP to older and chronically or terminally-ill patients. The Position Statement was a powerful rallying-call for cultural change within the profession. The second Working Party developed on-line ACP training modules for doctors.

Professor Cartwright delivered numerous ACP seminars to doctors, nurses, allied health workers and residential/community care staff (e.g. more than one per month in 2011-13). Many had very broad reach (e.g. four video-link training sessions 2009-11 to staff in 1500 residential aged care facilities across Australia). The research also impacted training for health professionals in Australia and the Netherlands, and the Professor educated legal professionals and politicians on ACP (e.g. via the COTA NSW Parliamentary Forum).

Professor Cartwright’s ACP research has had a significant impact on the community. Her monthly presentations to community groups (2011-13), radio interviews (e.g. 32 regional and 4 national interviews 2011-12), monthly ABC Radio National interviews (2015-16), appearances on national television and contributions to The Conversation significantly increased awareness of ACP. She also delivered more than 200 face-to-face presentations to audiences ranging from 20 to several hundred community members, and health and legal professionals. Her radio and television sessions potentially reached thousands more people. Community health support services and advocacy groups such as CareSearch and the Leukemia Foundation also benefitted from Professor Cartwright’s presentations and further disseminated her work to interested parties.

More than 425,000 Australians have dementia and this figure is expected to increase 160% by 2056. ACP is critical for people in early stages of dementia, conferring control to the person with dementia and taking a burden from family members and carers. At the invitation of Alzheimer’s Australia (now Dementia Australia), Professor Cartwright produced two tailored discussion papers on ACP in 2010 (available on Dementia Australia website, along with four of Professor Cartwright’s videos). Professor Cartwright’s 2011-12 National Tour (21 presentations) across all States and Territories reached hundreds of people with dementia and their families and carers. She is co-author of Dementia and Your Legal Rights (2016) developed with guidance from people with dementia and their carers.

ACP can help mitigate discrimination against lesbian, gay, bisexual, transgender and/or intersex (LGBTI) people, particularly in ensuring that same-sex partners and other family members of choice are involved in end-of-life medical decision-making. Professor Cartwright’s research identified low levels of awareness and use of ACP mechanisms, and failure by family and health care professionals to acknowledge the appropriate substitute decision-maker in the end-of-life care of LGBTI people. To address these needs, she produced a resource booklet Respect my decisions. It’s my right! A Guide to Advance End-of-Life Care Planning for Gay, Lesbian, Bisexual, Transgender and Intersex People (2011). It has been widely distributed via LGBTI groups and online (e.g. Legal Aid NSW, AIDS Council of NSW websites) and empowered the LGBTI community to demand its rights.

Professor Cartwright’s research has influenced policy for LGBTI people. The National LGBTI Health Alliance (peak organisation) opened its Submission to the Senate Standing Committee on Community Affairs: Provision of Palliative Care (2012) with a quote from Professor Cartwright. The Alliance’s lobbying activities culminated in the inclusion of LGBTI people as a “special needs group” within the Aged Care Act 1997 (Cth) in 2012, and in the development of a National LGBTI Ageing and Aged Care Strategy in which ASLaRC’s research was the only ACP reference. This Department of Health strategy focused on enhancing LGBTI people’s awareness and understanding of ACP.

Evidence from Professor Cartwright and her team’s research also helped create cultural and social change by contributing to debate around marriage equality. She has also had ongoing influence on wider legal reform in ACP (Queensland Law Reform Commission - seven citations 2009-2010).

ASLaRC’s work on ACP delivered social benefits to many sectors of Australian society, enhancing consumer-directed care, empowering marginalised groups, reducing carer burden and protecting health and other professionals.

Professor Colleen Cartwright led the Australian arm of a National Health and Medical Research Council grant (2002-05). This comparative study looked at medical decisions at end of life across six European countries and Australia. Other Australian-based researchers on the project were Professor Gail Williams, Emeritus Professor Malcolm Parker and Dr Margaret Steinberg (all from University of Queensland, or UQ).

Building on this knowledge, Professor Cartwright worked with Dr Joel Rhee and Professor Nicholas Zwar (both of the University of New South Wales) and Ms Josephine Montgomery (from NSW Health, the funding body) undertook a state-wide study of New South Wales medical practitioners to determine knowledge of/attitudes to end-of-life medical decisions (2008-09). The research identified potential legal risk for medical practitioners due to a broad lack of understanding of the function of various legal instruments involved in such decisions.

Professor Cartwright, together with Professors Ben Wright (from QUT), Lindy Wilmott, Gail Williams, and Emeritus Professor Malcolm Parker (all of UQ), broadened the study of medical decision-making in end-of-life decisions to Queensland, New South Wales and Victoria (ARC Linkage Grant LP0990329 Withholding and withdrawing life-sustaining treatment from adults lacking capacity: enhancing medical decision-making through doctors' compliance with the law (2010-13)). Working with specialists in Intensive Care, Emergency Medicine, Palliative Medicine, Medical Oncology, Respiratory Medicine, Renal Medicine and Geriatric Medicine, they explored compliance with the law. Again, doctors demonstrated lack of awareness of their legal duties.

With funding from the Law and Justice Foundation of NSW, Professor Cartwright and Dr Tania Lienert (also of SCU) researched end-of-life care for the LGBTI community and developed an LGBTI-specific end-of-life care resource booklet.