Specialist Palliative Care and Advance Care Planning Advisory Services. Decision Assist Program Evaluation Report Summary

Specialist Palliative Care and Advance Care Planning Advisory Services Decision Assist Program Evaluation Report Summary

CONTENTS 1 BACKGROUND... 4 2 DECISION ASSIST CONSORTIUM... 4 3 FINDINGS AT 30 JUNE 2016: PROJECTS... 6 3.1 Telephone Advisory Service... 6 3.2 National Communications Strategy... 7 3.3 Guidance and Technological Innovation (GATI) Project... 7 3.4 GP Palliative Care Education and Resources Project... 8 3.5 GP Training and Resources Advance Care Planning Project... 9 3.6 Aged Care Training and Resources Project... 10 3.7 Linkages... 12 4 SUMMARY: PROGRAM OBJECTIVES... 13 4.1 Provide specialist palliative care and advance care planning advice to aged care providers and general practitioners caring for recipients of aged care services in all states and territories... 13 4.2 Improve palliative care skills and advance care planning expertise of aged care service staff and general practitioners caring for recipients of aged care services... 13 4.3 Improve linkages between aged care services and palliative care services... 14 4.4 Improve the quality of care for aged care recipients, prevent unnecessary hospital admissions and shorten hospital stays... 14 5 SPECIFIC NEEDS POPULATIONS... 15 6 LESSONS LEARNT... 15 6.1 Program level... 15 6.2 Communications... 16 6.3 Telephone advisory service... 16 6.4 General practice training and resources... 16 6.5 Aged care training and resources... 16 6.6 Guidance and technological innovation... 17 6.7 Evaluation... 17 7 CONCLUSION... 17 8 RECOMMENDATIONS... 18 1

ACKNOWLEDGEMENTS In October 2016, the Specialist Palliative Care and Advance Care Planning Advisory Services program (Decision Assist) evaluation report was finalised. The evaluation report relates to the period 2013 16 and was a deliverable of Austin Health (the lead agency) to the Commonwealth of Australia. Norma Currie, Linda Nolte, Lynne Walker and Dr Karen Detering provided writing, editing and interpretation of the findings. The report was based on an evaluation report provided by Associate Professor Deborah Parker and Ms Karen Clifton from the University of Queensland evaluation team. The evaluation team coordinated the presentation of each project, significant analysis of results, and outcomes against the program evaluation framework. The Decision Assist Evaluation Advisory Committee provided advice regarding the development of the program logic and evaluation framework. The program evaluation received ethics approval from the University of Queensland. Associate Professor Virginia Lewis from La Trobe University provided expert advice to the University of Queensland evaluation team throughout the program and conducted the program governance review. Information included in the report was provided by consortium members over the course of the program activities and in a final project report. Comments and enquiries should be addressed to: Dr Karen Detering Advance Care Planning Medical Director Austin Health Karen.Detering@austin.org.au T: 03 9496 6616 M: 0419 874 796 Ms Linda Nolte Advance Care Planning Program Manager Austin Health Linda.Nolte@austin.org.au T: 03 9496 6651 M: 0413 253 765 While the Australian Government Department of Health has contributed to the funding of this material, the information contained in it does not necessarily reflect the views of the Australian Government and is not advice that is provided, or information that is endorsed, by the Australian Government. The Australian Government is not responsible in negligence or otherwise for any injury, loss or damage however arising from the use of or reliance on the information provided herein. Decision Assist is funded by the Australian Government 2

LIST OF ABBREVIATIONS ACP ACSA ANZSPM CALD GATI GP LASA LGBTI PHN PN RACGP SPC advance care planning Aged and Community Services Australia Australian and New Zealand Society of Palliative Medicine culturally and linguistically diverse guidance and technological innovation general practitioner Leading Age Services Australia lesbian, gay, bisexual, transgender and intersex primary health network practice nurse The Royal Australian College of General Practitioners specialist palliative care 3

1 BACKGROUND The Specialist Palliative Care and Advance Care Planning Advisory Services Program (known as Decision Assist) was established to enhance national provision of palliative care and advance care planning advisory services to recipients of aged care services. In July 2013, the Australian Government committed to funding Decision Assist for three years via the Living Longer, Living Better aged care reform package. These reforms included strengthening the interface and building better health connections between the health and aged care systems. Decision Assist aligned with the National Palliative Care Strategy 2010 Supporting Australians to Live Well at the End of Life. The primary objectives of Decision Assist were to: provide specialist palliative care and advance care planning advice to aged care providers and general practitioners (GPs) caring for recipients of aged care services in all states and territories improve palliative care skills and advance care planning expertise of aged care service staff and GPs caring for recipients of aged care services improve linkages between aged care services and palliative care services improve the quality of care for aged care recipients, prevent unnecessary hospital admissions and shorten hospital stays 2 DECISION ASSIST CONSORTIUM Decision Assist was administered by a consortium comprising eight national agencies or universities with extensive expertise in palliative care, advance care planning and aged care. Austin Health, a recognised leader in advance care planning, was the lead agency contracted by the Australian Government Department of Health. Decision Assist was responsible for delivering on a range of initiatives including: 1. Telephone advisory service 2. National communications 3. Guidance and technological innovation (GATI) 4. GP training and resources for palliative care 5. GP training and resources for advance care planning 6. Aged care training and resources 7. Linkages projects 8. Evaluation All of the projects except for the national communications strategy were included in the evaluation framework, received ethics approval and were overseen by national advisory committees consisting of the consortium agencies. A governance review identified the importance of consortium member roles and responsibilities, appropriate independent governance arrangements, and the role of the lead agency. Table 2.1 lists each consortium member, their area of responsibility and/or project. 4

Table 2.1: Summary of project responsibilities for each consortium partner Consortium partner Responsibilities Austin Health Lead agency: financial, contractual, governance and reporting requirements Palliative Care Australia Flinders University (CareSearch) Australian and New Zealand Society of Palliative Medicine Program secretariat GP training and resources for advance care planning Aged care training and resources program Telephone advisory service (advance care planning) Environmental scans Telephone advisory service setup and external contract with specialist palliative care provider National communications strategy Guidance and technological innovation (GATI) project including website hosting and app development Support to all projects, in particular aged care training and resources project with access to the CareSearch learning management system GP palliative care education and resources project Queensland University of Technology University of Queensland Aged and Community Services Australian Leading Age Services Australia Linkages project: 20 national demonstration projects Evaluation: program logic, evaluation framework Ethics: program ethics for consortium projects Assistance with design of online modules and face-to face workshop content Delivery of Queensland aged care workshops Interface with aged care industry, both state and national Expert evidence across all projects Interface with aged care industry, both state and national Expert evidence across all projects LASA and ACSA did not have an individual project as part of Decision Assist; instead they provided each project and the consortium partners with advice and support to ensure the projects would meet the needs of the aged care sector. LASA and ACSA provided representatives for each advisory group and reviewed documents and processes as required. 5

3 FINDINGS AT 30 JUNE 2016: PROJECTS 3.1 Telephone Advisory Service In 2014, Palliative Care Australia led the establishment of a national telephone advisory service to provide access to specialist palliative care (commenced September 2014) and advance care planning (commenced July 2014) advice via a single 1300 number. The advisory service was developed for aged care staff and general practitioners who provide care for older people. The specialist palliative care advisory service was available 24 hours per day, seven days per week while the advance care planning advisory service operated between 8 am and 8 pm, seven days per week. The advisory services were staffed by registered nurses with access to a palliative care specialist physician and an experienced advance care planning physician as required. An environmental scan and survey of existing specialist palliative care and advance care planning services, resources and frameworks across all jurisdictions was to inform the advisory service project. Following the survey, the existing Palliative Care Australia national service directory located on their website was updated to provide a comprehensive directory of specialist palliative care and advance care planning services. During the period September 2014 to June 2016 (a 21-month period), telephone Advisory Service data and information were collected and reported. In general, the uptake of the national specialist palliative care and advance care planning advisory service was low, with an average of 21 calls per month (n = 469) to the specialist palliative care service and 16 calls per month (n = 356) to the advance care planning service. However, for those who accessed the service, the level of satisfaction was very high for both components (92% SPC, 90% ACP). The telephone advisory service was accessed by staff from all jurisdictions across Australia with the majority of calls from New South Wales (21% SPC, 28% ACP) and Victoria (36% SPC, 24% ACP). Most of the callers to the specialist palliative care advisory service were nurses (68%, n = 317) and doctors (15%, n = 71). Most of callers to the advance care planning advisory service were nurses (61%, n = 218), other health-related professionals (28%, n = 100) and doctors (8%, n = 29). The most common reason for calling were medication advice (23%SPC, n = 110), symptom management (20% SPC, n = 92), ACP information (31% ACP, n = 113), education and training information (30% ACP, n = 107) and case-specific discussion (13% ACP, n = 48). The findings from the telephone advisory service evaluation demonstrated a limited uptake and low call-volume affecting the cost-effectiveness of the advisory service. The initial environmental scan did not provide comprehensive information to inform the project. In particular, detailed information regarding existing telephone advisory services, their usage and current practices that GPs and aged care staff utilise to seek advice regarding specialist palliative care and advance care planning was not collected. The Decision Assist evaluation did not identify why only a low proportion of the target audience accessed the service. However, for those who did access the advisory service, both the target audience and reason for calling were appropriate and there was a high level of satisfaction. Limitations to the uptake of the advisory service may include existing state or territory specialist palliative care telephone services, limited impact of the national communications activities promoting 6

the availability of the service, and barriers within general practice and aged care that affect health professionals and care providers accessing advisory services within their workflow. 3.2 National Communications Strategy In 2014, Palliative Care Australia led the establishment of a national communications strategy. The purpose of the strategy was to provide an overarching framework to promote Decision Assist. It outlined a range of planned communications activities to inform, educate and engage target audiences about each initiative. More specifically, it aimed to increase Decision Assist brand recognition, promote education, the telephone advisory service and other resources to general practice and aged care providers, and create linkages across the sectors. Key messages and communication tools were created for each target audience. The national communications strategy resulted in a comprehensive range of activities including establishment of a Decision Assist brand and style guide, establishment of a national stakeholder database, advertising, editorials, e-newsletters, special events, conference presentations or sponsorship, and media releases. In October 2014, the program was launched by the Chief Executive of Leading Age Services Australia. In July 2014, the Decision Assist website was launched by CareSearch. The Telephone Advisory Service was promoted via the Decision Assist website and was also advertised in the newsletters of approximately 55 stakeholder organisations that targeted nurses, GPs and aged care staff. Advisory service advertising was placed on Nursing Review, Australian Doctor, and Medical Observer websites. In December 2014, a Decision Assist Twitter account was established. In July 2015, a 30-minute program was telecast on the Aged Care Channel. During this month, the palliagedgp app was promoted nationally. Decision Assist has resulted in more than 12 conference presentations nationally or internationally. The findings indicate a comprehensive range of activities to market and promote Decision Assist; however, there was no evaluation assessing stakeholder awareness or the impact of these communications initiatives. 3.3 Guidance and Technological Innovation (GATI) Project In 2014 CareSearch, the palliative care knowledge network, led the establishment of the GATI project. The GATI project was responsible for the identification, review and preparation of palliative care and advance care planning guidance documents; creation and maintenance of the Decision Assist website and apps (palliagedgp and palliagednurse); and access to the CareSearch learning management system, which provided support to the aged care training and resources project. These national guidance, technology and educational resources were developed and/or made available for aged care staff and GPs who provide care for older people. An environmental scan of guidance materials and published literature informed the development of the GATI resources. In July 2014, the Decision Assist website (positioned on the CareSearch site) was launched. The website provided users with information regarding Decision Assist, the national telephone advisory service number, a description of the consortium members and projects, access to guidance resources and apps, as well as access to an online learning management system that included specialist palliative care and advance care planning modules for aged care staff. During July 2014 to March 2016 (20-month period), there were 231,545 visits to the website, 19,910 visits to the clinical links, and 96,260 visits to the education and training section. It is unclear if these were all unique visitors. The 7

palliagedgp app was released on 30 April 2015; there were 3003 downloads of the app between May 2015 and April 2016. The palliagednurse app was released on 12 May 2016. The GATI project resulted in the development of a hub of existing nationally relevant guidance documents (mostly palliative care), available on the Decision Assist website. Evidence and practice resources were also made available relating to SPC and ACP for a range of groups including: Aboriginal and Torres Strait Islander people people from culturally and linguistically diverse (CALD) backgrounds people identifying as lesbian, gay, bisexual, transgender and intersex (LGBTI) rural and remote populations people with religious and spiritual needs Veterans financially and socially disadvantaged people people with dementia During July 2014 to March 2016 (20-month period), there were 19 910 visits and 66 055 views of the clinical guidance pages. There were 32 620 visits and 125 721 page views of the resources and supplementary materials. No data are available regarding the number of visits to the pre-existing CareSearch resources prior to Decision Assist and therefore the impact of Decision Assist in relation to these visits is unknown. In October 2015, a user survey of the Decision Assist website was conducted. A total of 3712 users registered for the Augment newsletter were invited to participate, and of these 315 (8.5%) completed the survey. The majority of survey respondents were from residential aged care (58%) and the most common reason for visiting the website was for clinical information at point of care (25%). The majority of survey respondents stated the website was useful for finding information, accessing workshop information and developing personal knowledge. The findings from the GATI project evaluation indicated that there was good uptake of guidance materials, website and apps, with the majority of users finding these resources useful. The presentation of unique visitors to the website may provide a clearer understanding of the uptake of this resource. Given the low number of responses to the user survey, further evaluation of users may have provided further insights. The project did not evaluate the newly developed apps, in terms of whether they were useful, and whether any improvements may be required. 3.4 GP Palliative Care Education and Resources Project In 2014, ANZSPM led the establishment of a national GP palliative care education and resources project. The aim of the project was to produce and implement a package of educational resources that, where appropriate, were accredited by the Australian College of Rural and Remote Medicine (ACRRM) and The Royal Australian College of General Practitioners (RACGP). The project included a train the trainer component, a series of short presentations (less than 30 minutes in duration), development of online education modules, an active learning module, clinical audit and train the trainer active learning module to promote sustainability in general practice. 8

Overall, the project demonstrated good national reach, with 4565 GPs and 723 practice nurses (PNs) attending workshops and/or short presentations, at relevant general practice conferences and education meetings. Data were not collected in a way that enabled assessment as to how many unique GPs and PNs attended each session. Assuming each GP and PN is unique, this represents 20% of GPs and 7% of PNs nationally. At March 2016, a total of 52 GP, PN or train the trainer workshops/presentations were conducted, with a further 67 trainer-led workshops scheduled or planned. At January 2016, 103 GPs had completed the online modules, 17 GPs had completed the active learning module, and 15 had completed the clinical audit. Evaluation was undertaken for the general practice workshops (n = 300, 7%) and online modules (n = 77, 75%), with GPs reporting an increase in awareness and knowledge of palliative care. GPs reported an increased understanding of both palliative care provision for older Australians, and the principles of a palliative care approach as it applies to the clinical management of frail older adults and those with advanced chronic disease. The GPs were more likely to report understanding the benefits of: using a framework of care based on prognostic trajectories to identify the palliative care needs of older Australians ACP discussions and documentation to inform timely and appropriate clinical care for older Australians participating in at least one palliative care case conference in a patient s last few months of life to support timely and appropriate end-of-life care end-of-life management plans to support a patient to die at home if that is their stated wish The evaluation results for PNs (n = 278, 38%) also indicated a greater understanding of the importance of a palliative care approach for older Australians. Evaluation of 15 GP clinical audits indicated an improvement in clinical care of patients, particularly in relation to documented preferred place of death and evidence of a terminal care management plan. The findings from the evaluation of the national GP Palliative Care Education and Resources Project demonstrated good reach and, for the 7% of GPs and 38% of PNs who completed evaluation, an increased understanding. The clinical audit attempted to identify a change in clinical practice; however, further evaluation and understanding of the enablers may be helpful. A limitation to these results is the poor response rate to evaluation surveys. There is opportunity for this palliative care education initiative to collaborate with the Patient Experience in the Palliative Approach (PEPA) program and/or the Palliative Care Curriculum for Undergraduates (PCC4U). 3.5 GP Training and Resources Advance Care Planning Project In 2015, Austin Health led the establishment of a national GP training and resources advance care planning project. The aim of the project was to produce and implement a faceto-face train the trainer model recruiting general practitioners or practice nurses as trainers via Medicare Locals and primary health networks (PHNs). Overall, the project demonstrated good reach within the implementation timeframe. At June 2016, seven train the trainer workshops were completed in most jurisdictions including a 9

session held in Tasmania for medical educators. Trained champions included 66 GPs, 64 PNs and nine others. Fifty-eight ACP workshops were then delivered by the champions, in association with PHNs, to 932 participants. Of these participants, 303 were GPs, 202 were PNs and 427 were recorded as other. The other group included GP registrars/trainees, registered nurses, allied health professionals and Aboriginal health workers. Thus, a total of 369 GPs, 266 PNs and 427 others, all unique individuals, attended ACP training, representing 2% of GPs and 1% of PNs nationally. Evaluation was undertaken by participants, before and after workshops. This program of education in ACP demonstrated an increase in awareness and knowledge for GPs and PNs. Specifically, there was an increase in the proportion of respondents agreeing that substitute decision makers do not have authority to make healthcare decisions while patients are competent, doctors are not able to ignore valid advance care directives, and patients have the right to refuse treatment. Following training, participants also reported increased confidence in having ACP discussions, and there was an increase in the number who felt that ACP was a valuable part of care for older people. Education also raised respondent awareness of the Decision Assist ACP resources. Ninety-nine per cent of participants stated they agreed or strongly agreed that they would recommend the workshop to others. The findings from the evaluation of the national GP training and resources advance care planning project demonstrated good reach and increased knowledge of ACP. There were a large number of workshops delivered by GP and PN champions, facilitating an increased reach for the project. Further evaluation of the enablers to ACP in general practice may help inform future education. A limitation to this project was that online education modules and an RACGP clinical audit were not established. Additionally, findings may be limited as the workshops were not delivered to all jurisdictions. There is opportunity for this ACP education initiative to collaborate with the Patient Experience in the Palliative Approach (PEPA) program and/or the Palliative Care Curriculum for Undergraduates (PCC4U). 3.6 Aged Care Training and Resources Project In 2014, Austin Health led the establishment of a national aged care training and resources project with the support of the University of Queensland and CareSearch. The program of education for aged care services staff included six online modules followed by two face-toface experiential workshops. A version was developed for both residential and community aged care sectors. The modules and workshops were designed specifically for residential and community staff and aimed to increase their knowledge of, and confidence in, advance care planning and palliative care. The project also included an after death audit tool, organisational audit tool and two webinars. The online education modules had an enrolment of 2602 participants for residential aged care. Of these, 1613 (62%) completed all modules, 183 (7%) partially completed them and the remaining 793 (31%) did not commence the modules. The community aged care modules had an enrolment of 568 participants and 352 (62%) completed all modules, 32 (6%) partially completed modules and 184 (32%) did not commence the modules. The two aged care webinars resulted in 443 and 238 attendances, respectively. The webinars were subsequently available on the Decision Assist website, but data regarding the number of views following the webinars were not collected. 10

One hundred and fifty-one workshop sets were delivered nationally (including 103 residential, 29 community and 19 combined residential/community) with 1871 individuals attending both workshops and a further 528 attending only one of the workshops. The majority of participants were registered nurses (57%), enrolled nurses (16%) and assistants in nursing (6%). Participants at workshops represented 652 residential aged care facilities or 24% of the total residential aged care facilities in Australia (n = 2681) and 154 community organisations or 7% of the total Home Care Package providers nationally (n = 2263). These are underestimates as 423 participants did not identify their workplace. Evaluation was undertaken by participants before and after the workshops. The majority of participants rated high satisfaction with the education program. Completion of the online modules significantly increased participant knowledge in relation to the key processes they had been taught around advance care planning, palliative care and terminal care for both residential and community participants. An increase in confidence was also demonstrated for both residential and community participants in regards to discussing advance care planning, conducting a palliative care case conference and using an end-of-life care pathway. Measures of quality of care and hospitalisations at the end of life were available from this project. After death audits were conducted by workshop participants in self-selected residential aged care facilities and community services. Baseline data were obtained from 842 residential aged care facility audits and 182 community audits. At post-intervention, 393 residential aged care facility audits and 77 community audits were collected. These audits demonstrated some improvements in quality of care for residents and clients. Specifically, for residential aged care facilities this included: increased documentation of residents preferences for future care (from 79% to 90%) staff more likely to report recording these wishes on an aged-care-specific advance care directive or plan (an increase from 22% to 29%) a significant increase in palliative care case conferences (from 38% to 49%) an increase in the percentage of residents commenced on an end-of-life care pathway (from 41% to 55%). The smaller sample of community after death or discharge audits indicated some improvements in quality of care for clients. Specifically, this included: an increase in the proportion of community services indicating they recorded wishes on their service advance care directive/plan (from 8% to 25%) or a state or territory statutory advance care directive/plan (from 13% to 33%) an increase in palliative care case conferences (from 16% to 27%) an increase pre- to post-intervention in the percentage of clients commenced on an end-of-life care plan by their community service (from 14% to 24%) a reduction in length of time on an end-of-life care plan from 30 days at baseline to seven days (recommended) Organisational audits were conducted by some participants from both residential and community services, with baseline and post-intervention data available for 78 residential and 18 community services. In residential services, there were significant improvements in: reviewing resident preferences in regard to future hospitalisation 11

having policy and procedure related to the palliative approach arranging a palliative care case conference timing for commencement of an end-of-life plan the management of delirium No significant changes were detected in community services organisational audits, most likely due to the small sample size. The findings from the national aged care training and resources project indicates a high level of participant satisfaction; increased participant knowledge, skills and confidence; improvements to organisational systems; and some improved outcomes for individuals. Limited evaluation findings were available for the webinars or online education modules although these are both effective strategies to reach large audiences. Further initiatives are required to embed change, sustain improvements, and measure performance at the health professional, organisational and individual care recipient outcome level. 3.7 Linkages In 2014, the Queensland University of Technology led the establishment of a national linkages project. This comprised a comprehensive literature review regarding mechanisms for successful linkages, development of a linkages toolkit, and administration of 20 demonstration projects across six states. The aim of the project was to promote linkages between specialist palliative care and aged care in various contexts and settings. The project demonstrated good national reach and breadth of social contexts. Projects included 12 rural and regional locations, one CALD project, two projects for Aboriginal and Torres Strait Islander people, one LGBTI project, and one homelessness project. The funded projects were geographically dispersed, reaching South Australia, New South Wales, Victoria, Tasmania, Western Australia and Queensland. Aged care and palliative care services participating in the linkage projects demonstrated statistically significant changes in seven areas of organisational change: communication pathways, formalised agreements and plans, role descriptions, multidisciplinary care, designated linkage workers, continuing professional development and continuous improvement. In summary, these included: regular contact with local palliative care/aged care services to create and maintain services and to provide continuity of care undertaking case conferencing with palliative care/aged care services about care establishing formal linkage partnerships and communications across services providing adequate allocation of resources to sustain linkage plans routinely retrieving evaluation service data for continuous improvement of linkages between palliative care and aged care services conducting regular multidisciplinary interactions with palliative care/aged care services routinely using shared care plans with palliative care/aged care services understanding of the role of the linkage worker between palliative care/aged care services routine provision of professional development sessions 12

improvements in routinely collecting and reporting minimum data with palliative care/aged care services Findings from the linkages project indicated aged care staff demonstrated improved palliative care skills and advance care planning expertise. Online survey results indicated increased knowledge in using a pain scale and the importance of advance care planning on admission. Self-rated knowledge and confidence also increased in relation to advance care planning and palliative care case conferences. However, there was a delay in the development of linkages tools and resources. Further linkage projects may help to embed change, sustain improvements, and measure performance at the health professional, organisational and patient outcome level. 4 SUMMARY: PROGRAM OBJECTIVES 4.1 Provide specialist palliative care and advance care planning advice to aged care providers and general practitioners caring for recipients of aged care services in all states and territories Decision Assist implemented a comprehensive range of national initiatives to address the objective of provision of specialist palliative care and advance care planning advice to aged care providers and GPs caring for recipients of aged care services in all states and territories. In general, all projects demonstrated significant reach in the general practice and aged care sectors nationally. Health professionals or aged care staff participating in education and linkages projects demonstrated knowledge increase, some change in clinical practice, and a high rate of satisfaction with initiatives. Decision Assist activities have been promoted and advertised to a large number of stakeholders, professional organisations and leading agencies. The website has resulted in a large number of visits; however, there is limited understanding of unique visits, national reach and impact of the online education modules. Although the uptake of the specialist palliative care and advance care planning telephone advisory service has been low, the majority of callers were from the target audience of registered nurses and doctors; the service had more than a 90% call satisfaction rate; and the calls addressed appropriate medication, symptoms management and advance care planning information queries. 4.2 Improve palliative care skills and advance care planning expertise of aged care service staff and general practitioners caring for recipients of aged care services Decision Assist implemented a comprehensive range of national education initiatives to address the objective and improve palliative care skills and advance care planning expertise of aged care service staff and GPs caring for recipients of aged care services. Education initiatives included online modules, face-to-face training, train the trainer and clinical audits. Participants of Decision Assist training included 6359 from general practice and 2399 from the aged care sector. The support of PHNs, LASA and ACSA was valuable in reaching the target audience. Participant evaluation demonstrated an increase in knowledge and confidence, some change in clinical practice and a high level of satisfaction. An education approach that included online education modules and face-to-face training appeared to have 13

a positive impact on skills and clinical practice change. There is ongoing interest in the sectors for education, and the majority would highly recommend the Decision Assist education initiatives. Webinars demonstrated an opportunity to reach a large audience; however, further impact evaluation is required. Further refinement and evaluation is also required for the online education modules. Following feedback from those who participated in the primary care education, both GPs and practice nurses, changes to the content of the advance care planning module occurred to increase the relevance to the GP audience. Feedback from the aged care sector raised some concern about time requirements for attending two face-to-face workshops but welcomed other educational opportunities for their staff. 4.3 Improve linkages between aged care services and palliative care services Decision Assist implemented a comprehensive National Linkages Project to address the objective and improve linkages between aged care and specialist palliative care services. Twenty national demonstration projects implementing at least one recommended linkage strategy provided evidence that high-level support for advance care planning and palliative care across the two sectors is possible. These projects also included specific needs populations and demonstrated results that will be useful for transferability in these populations. The linkage projects were asked to identify sustainability plans. The extent to which changes can be maintained is not yet known but systemic change is a precursor to long-term change, and has been achieved across a range of domains. 4.4 Improve the quality of care for aged care recipients, prevent unnecessary hospital admissions and shorten hospital stays Decision Assist implemented a comprehensive range of initiatives to improve the quality of care for aged care recipients, prevent unnecessary hospital admissions and shorten hospital stays. The general practice clinical audit and aged care organisational and death audits provided some useful data and information to demonstrate an improvement in quality of care. In general, there was an increase in documented patient preferences and advance care directives, increase in organisational advance care planning-related policies, and more evidence of end-of-life care planning. Decision Assist deliverables included national collection and review of hospital admission data for people who were admitted to an acute care facility for end-of-life care. Collaboration with existing data collection infrastructure including West Australia Integrated Data Set, Aged Care Standards and Accreditation Agency (now the Australian Aged Care Quality Agency), CareSearch and the Australian Institute of Health and Welfare were suggested. Decision Assist did not collaborate with or report on national data sets during the reporting period. There are limited easily accessible population or health service-based palliative care and/or advance care planning data. There is no dedicated consumer survey. Therefore, it is difficult to accurately measure an improvement in quality of care or to assess if there was a change in unnecessary hospital admissions or in the length of hospital stays. 14

5 SPECIFIC NEEDS POPULATIONS During 2013 16, the program provided information resources on advance care planning and palliative care suitable for different spiritual and faith-based perspectives, people from CALD backgrounds, Aboriginal and Torres Strait Islander people, people who identify as LGBTI and people who are homeless or at risk of homelessness. The GATI project compiled existing resources on these populations, which were made available on the Decision Assist website. These were promoted via the telephone advisory service and the education programs to aged care workers and GPs. The uptake of these resources was demonstrated by 2579 page views for Aboriginal and Torres Strait Islander pages, 2732 for CALD pages, 1198 for homelessness pages, 2268 for LGBTI pages, and 2439 for the spiritual and faith pages with an additional 1927 page views for policy issues related to spirituality and faith. The Linkages project specifically targeted Aboriginal and Torres Strait Islander people, and CALD, LGBTI and homeless populations. Of the 20 demonstration projects, two focused on Aboriginal and Torres Strait Islander people, one on CALD people, one on LGBTI people, and one related to homelessness. Decision Assist has produced limited resources for specific needs populations and diverse communities. There is an opportunity for further engagement with these populations and development of palliative care and advance care planning resources for health professionals, aged care workers and consumers. 6 LESSONS LEARNT 6.1 Program level Consortium and program governance should have ensured roles and responsibilities were defined at the beginning of the project, and an appropriate National Advisory Group established consisting of relevant stakeholders. The lead agency and consortium partners should have ensured access to quality project staff, program leadership, financial and contracts support, appropriate reporting, and risk management. A strength of the Decision Assist consortium was the inclusion of peak bodies: Palliative Care Australia, Advance Care Planning Australia, ACSA, LASA and ANZSPM. This involvement provided direct credibility in the aged care and palliative care sectors, and built on previous experience in delivering programs in the sectors. LASA and ACSA provided valuable feedback in regard to the reform agenda and pressures and opportunities in the aged care sector. The absence of general practice peak bodies, other than as brokers of education, limited the same input for that target audience. Decision Assist was conducted under the national reform agenda in aged care while significant changes were occurring in parallel at the state and territory level. The initial environmental scan surveys provided important information on activities occurring in the sector and the need for, and possible uptake of, education and training, but they occurred at a particular point in time. Regular (six-monthly) rapid scans could have identified national and state level initiatives that may have supported or complemented the activities of Decision Assist (e.g. South Australia Resuscitation Plan 7 Step Pathway for health professionals). While known initiatives were sometimes discussed at the Expert Project Group meetings, this information was not incorporated into project activities or the program risk register. 15

6.2 Communications The importance of a national communications strategy was underestimated and therefore under-resourced. Communications needed to focus more directly on the hard-to-reach population of frontline aged care workers, engagement with state and territory departments, and engagement of PHNs, GPs and PNs. 6.3 Telephone advisory service The establishment of a national telephone advisory service should be based on need expressed by the target audience and evidence base. Greater environmental scanning of competing advisory lines and/or promotions was required. The potential usage by the target audience should have been discussed at length with ACSA, LASA and ANZSPM as well as external discussion with RACGP and other general practice bodies. Costing based on actual call volume, not projected call volume, would have been more appropriate. During 2016 17, the telephone advisory service will be undergoing further review and transition to promote sustainability. 6.4 General practice training and resources GP training and resources was initially one project but was separated early in the program into advance care planning and palliative care. This meant that education was being delivered to the same target audience but by two different consortium members, and while the content aligned overall there were some differences, which appeared to create some concerns. While some joint activities were conducted, two education programs may have created confusion and competition within the target audience. More detailed review of the content of the education by advisory groups and other peak bodies such as the Australian Primary Healthcare Nurses Association and the Royal Australian College of General Practitioners may have been helpful at the outset. Palliative care and/or advance care planning general practice education projects could have aligned with existing initiatives such as Patient Experience in the Palliative Approach (PEPA) and Palliative Care Curriculum for Undergraduates (PCC4U). Supporting Australian College of Rural and Remote Medicine, the RACGP and/or the Australian Primary Healthcare Nurses Association to lead the development of palliative care or advance care planning education initiatives may have increased the likelihood of participation by the sector. 6.5 Aged care training and resources There was confusion and disagreement across consortium members regarding the target audience for education. While the personal care workers/assistants in nursing make up 70% of the workforce, the education was focused on those responsible for clinical decision making (registered and enrolled nurses). A broader package of education targeting workers across all levels would have provided greater reach across the sector. A more detailed consideration of the specific issues relevant to the community aged care workforce and their clients is required to better facilitate uptake and improve outcomes for people living in the community, as distinct from those in residential aged care. An understanding of the personal care worker education channels or the possibility of embedding palliative care and advance care planning into the certificate-based training curriculum may provide greater impact on the knowledge and skills of the workforce. During 2016 17, further review of the content of these education activities is planned. Of note, none of the education initiatives tested a facilitator or mentor model of education. 16

6.6 Guidance and technological innovation The Decision Assist website was conceptualised as a repository for information rather than a dynamic site connecting projects and the target audience. More user testing and feedback may have been helpful to facilitate the usefulness and navigation of the website. During 2016 17, the Decision Assist website and online education modules will transition to the Advance Care Planning Australia website to promote access and further evaluation. Technology innovation did not consider the issue of advance care directive transferability across sectors or the inclusion of advance care planning within the My Health Record. This key issue has not been explored across these sectors at a national level. 6.7 Evaluation The engagement of an external consultant for the development of the evaluation framework was useful. Oversight by the evaluation advisory group was helpful, although most of the members were also involved in Decision Assist projects. As the evaluation team were also delivering services to the lead agency, greater use of external consultation and inclusion of other external members on the evaluation advisory group would have allowed for better governance and independent review of the program. Use of this expertise and opportunities to reflect were recommended in the commissioned governance review. Fragmentation of data collection, lack of raw data, the amount of detailed data for each project, and analysis by multiple staff across projects made it difficult for the evaluation team to standardise the quality of the data collected. This did not allow for cross-project analysis to occur. The program logic was weighted towards process indicators as it was difficult on a large scale to design and collect impact and outcome indicators, particularly those focused on resident/client outcomes. Without industry-level quality indicators and a monitoring framework, this issue is difficult to resolve. During 2016 17, a national advance care planning prevalence study will be conducted across three sectors including acute health care, general practice and aged care. This will provide the first of its kind national advance care planning dataset. Further national palliative care and advance care planning data are required to monitor performance of sectors and better understand the impact of policy and program implementation. 7 CONCLUSION Decision Assist has demonstrated achievements against all of the program objectives and has met the three program outcomes of: 1. the empowerment of GPs and aged care providers with knowledge of advance care planning and palliative care 2. the creation of links between aged care and palliative care 3. the provision of advice about palliative care, advance care planning and advance care directive resources, processes, legislation and accountabilities in the state or territory in which the aged care provider or GP is located For those health professionals or aged care staff who participated in Decision Assist initiatives, there was a high level of satisfaction, increase in knowledge and confidence, and some clinical and organisational change. The program evaluation identified further opportunities including: improving program governance 17

strengthening partnerships with general practice peak bodies undertaking further environmental scanning and gathering of evidence transitioning the telephone advisory services and website exploring organisational and system enablers in general practice and aged care to promote sustainability considering transferability of advance care directives promoting knowledge translation from the linkages projects developing resources for use with special needs populations extending education initiatives including webinars the development of a data and monitoring framework The 2016 17 period provides an opportunity to further embed and transition initiatives, extend the reach and awareness of Decision Assist, strengthen the evaluation, and report on Decision Assist outcomes in 2017. Recommendations have been outlined below. 8 RECOMMENDATIONS Phase Two of Decision Assist has been approved and a comprehensive work plan has been designed to continue to meet the program objectives. These recommendations may assist in the development of those or other future activities. It is recommended that: 1. National health reform programs involving consortia require an appropriate level of governance. The lead agency and consortium partner roles and responsibilities should be defined on the establishment of the consortium. The governance structure should consider roles and contract requirements. During 2016 17, a Decision Assist National Advisory Group should be established to represent key stakeholders and not just consortium members. 2. A comprehensive environmental scan and gathering of evidence relating to palliative care and advance care planning frameworks, strategies, legislation, published literature, projects (including education), resources and available data should be undertaken to inform future Decision Assist activities, palliative care and advance care planning policy, programs and priorities. 3. Person-centred care is a priority. Consumer involvement and consumer-driven initiatives should be considered for any future Decision Assist activities. Consumer and/or carer experience consultation and/or surveys, including those from special needs populations, could provide valuable information to inform Decision Assist palliative care and advance care planning policy and programs. 4. The scope of current training/learning activities for aged care workers who were not the target of current education, such as personal care workers/assistants, with respect to palliative care and advance care planning should be undertaken and gaps identified. Consultation with the workforce may provide valuable understanding of organisational and system enablers to promote impact and sustainability of education. 5. PHNs, leading general practice agencies, providers of aged care training programs and the workforce should be better engaged with Decision Assist to optimise the uptake of training and clinical practice change initiatives, and embed new curriculum. 18