Enduring documents : improving the forms, improving the outcomes

Most Australian states have introduced legislation to provide for enduring documents for financial, personal and health care decision making in the event of incapacity. Since the introduction of Enduring Powers of Attorney (EPAs) and Advance Health Directives (AHDs) in Queensland in 1998, concerns have continued to be raised by service providers, professionals and individuals about the uptake, understanding and appropriate use of these documents. In response to these concerns, the Department of Justice and Attorney-General (DJAG) convened a Practical Guardianship Initiatives Working Party. This group identified the limited evidence base available to address these concerns. In 2009, a multidisciplinary research team from the University of Queensland and the Queensland University of Technology was awarded $90,000 from the Legal Practitioners Interest on Trust Account Fund to undertake a review of the current EPA and AHD forms. The goal of the research was to gather data on the content and useability of the forms from the perspectives of a range of stakeholders, particularly those completing the EPA and AHD, witnesses of these documents, attorneys appointed under an EPA, and health professionals involved in the completion of an AHD or dealing with it in a clinical context. The researchers also sought to gather information from the perspective of Aboriginal and Torres Strait Islander (ATSI) individuals as well people from culturally and linguistically diverse (CALD) groups. Although the focus of the research was on the forms and the extent to which the current design, content and format represents a barrier to uptake, in the course of the research, some broader issues were identified which have an impact on the effectiveness of the EPA and AHD in achieving the goals of planning for financial and personal and health care in advance of losing capacity. The data gathered enabled the researchers to achieve the primary goal of the research: to make recommendations to improve the content and useability of the forms which hopefully will lead to an increased uptake and appropriate use of the forms. However, the researchers thought it was important not to ignore broader policy issues that were identified in the course of the research. These broader issues have been highlighted in this Report, and the researchers have responded to them in a variety of ways. For some issues, the researchers have suggested alterations that could be made to the forms to address the particular concerns. For other issues, the researchers have suggested that Government may need to take specific action such as educating the broader community with some attention to strategies that engage particular groups within communities. Other concerns raised can only be dealt with by legislative reform and, in some of these cases, the researchers have identified issues that Government may wish to consider further. We do note, however, that it is beyond the scope of this Report to recommend changes to the law. This three stage mixed methods project aimed to provide systematic evidence from a broad range of stakeholders in regard to: (i) which groups use and do not use these documents and why, (ii) the contribution of the length/complexity/format/language of the forms as barriers to their completion and/or effective use, and (iii) the issues raised by the current documents for witnesses and attorneys. Understanding and use of EPAs and AHDs were generally explored in separate but parallel processes. A purposive sampling strategy included users of the documents as principals and attorneys, and professionals, witnesses and service providers who assist others to execute or use the forms. The first component of this study built on existing knowledge using a Critical Reference Group and material provided by the DJAG Practical Guardianship Initiatives Working Party. This assisted in the development of the data collection tools for subsequent stages. The second component comprised semi-structured interviews and focus groups with a targeted sample of current users of the forms, potential users, witnesses and other professionals to provide in-depth information on critical issues. Outreach to Aboriginal and Torres Strait Islander Elders and individuals and workers with CALD groups ensured a broad sample of potential users of the two documents. Fifty individual interviews and three focus groups were completed. Most interviews and focus groups focused on perceptions of, and experiences with, either the EPA or the AHD form. In the interviews with Indigenous people and the CALD focus groups, however, respondents provided their perceptions and experiences of both documents. In general, these respondents had not used the forms and were responding to the documents made available in the interview or focus group. In total, seventy-seven individuals were involved in interviews or focus groups. The final component comprised on-line surveys for EPA principals, EPA attorneys, AHD principals, witnesses of EPAs and AHDs and medical practitioners with experience of AHDs as nominated and/or treating doctors. The surveys were developed from the initial component and the qualitative analysis of the interview and focus group data. A total of 116 surveys were returned from major cities and regional Queensland. The survey data was analysed descriptively for patterns and trends. It is important to note that the aim of the survey was to gain insight into issues and concerns relating to the documents and not to make generalisations to the broader population.