Care Planning Sub-Program: Findings from the national evaluation

The Care Planning Sub-Program funded 33 projects across Australia to improve the use of care planning to support clients to remain living at home during end-of-life care. Projects targeted a range of settings, including residential aged care, community settings, primary care and acute care in a variety of urban and rural areas. A small number targeted specific population groups such as Aboriginal and Torres Strait Islanders, children, adolescents and young adults, people with dementia, and people with chronic heart failure.

A range of service models were produced that focused on providing a client-centred approach to palliative care planning, building partnerships between services and professional disciplines, and enabling smoother transitions between care settings. The models sought to build on evidence currently available, and develop education packages, resources, tools, frameworks and policies to underpin them. The activities primarily focused on building capacity of the clinicians and service providers who provide care, in order to improve outcomes for clients.

Evaluation was a mandated component of all projects in order to identify: evidence-based practice: impacts and outcomes; project lessons; the degree to which capacity has been built; and aspects which can be transferred or generalised, or sustained beyond the life of the sub-program. These activities were supported by the national evaluation, which aimed to provide an aggregated perspective on the outcomes of the program as they impacted on clients (patients/residents, their carers and/or families); providers (health, care and support) and the system (e.g. primary care and aged care organisations). Many of the project officers were experienced clinicians with little formal project management experience, and a program support function was also included within the evaluation role to assist projects with evaluation and project planning.

The major outcomes of the sub-program was an increased focus on delivering evidence-based, client-centred care, and the need for services to work in partnership to achieve this. Case conferencing and multidisciplinary team meetings were key aspects of around half of all projects, and there is now a solid body of evidence emerging to support these processes. Benefits identified include improved awareness of the range of needs of clients, improved relationships between different care and clinical providers and, particularly for generalist providers, improved understanding of palliative care issues.

Similarly, around half of all projects included a focus on end-of-life care pathways, which are critical to providing a structured approach to individualised care for people who are dying. These pathways focus on the individual (and their families and carers), using evidence-based assessment tools to develop individualised care, monitor and manage client needs, and the inclusion of end of life decision making tools, such as advance care plans or directives. Staff were supported with education, policies and procedures to give them the skills and confidence to participate in end of life discussions with clients and provide appropriate care responses. A number of aged care projects showed a reduction in the number of residents needing transfer to hospital for end-of-life symptom management due to improved use of pain assessment tools and appropriate medications.

It is not possible to estimate the actual number of people with palliative care needs who were supported by the sub­ program, as that level of detail was not collected by all projects. However, evaluation findings from providers, who were the focus of much of the project activities, suggest that there were significant benefits for clients in the provision of more holistic and individualised, appropriately targeted care, and a reduction in the burden of care for carers.

The evaluation revealed a number of key issues which are central to improved care planning for people with palliative needs:

• Coordination of care requires dedicated resources to facilitate the processes. The reliance on general practitioners to have a primary role in care planning had mixed results; it worked well where  additional resources were available in the form of a facilitator responsible for coordinating the involvement of all parties, and where responsive communication processes were in place.
• Partnerships are fundamental to the provision of holistic, planned and coordinated care for people with palliative care needs; however these must be negotiated at the local level and context. The use of formal service agreements is useful only when there is a sound relationship between service providers, and this requires ongoing commitment and engagement by all involved.
• Palliative care is part of the core business for residential aged care, and end-of-life care requires ongoing support to ensure the competence, capacity and confidence of care staff to engage in discussions with residents, their families and carers, as well as being able to provide care that is evidence-based and in accordance with the residents' wishes. Supporting care staff to provide quality end-of-life care will benefit not only the resident but also staff, as well as broader health system with reduced transfers to hospitals.

Building a community of practice in care planning A significant achievement of the sub-program has been the development of communities of practice in palliative care planning that has the potential to continue to have an impact into the future. The national evaluation team included a focus on supporting individual projects with their evaluation and project activities, as well as facilitating relationship building among projects and with the broader palliative care sector. What started out as 33 individual projects has grown into something much more than the sum of its parts. Communities of practice have developed at the local level, with the building of partnerships through project activities such as inclusion of key players in advisory committees; the state and national levels, through the state forums and through national workshops facilitated by the national evaluators; and within service contexts, such as the aged care network established by the national evaluators.

The Care Planning Sub-Program has made a significant contribution to the improvement in understanding the models, processes and systems required to improve care planning for people with palliative needs. It has also demonstrated the program management attributes which support individual projects to move from a sense of isolation to being active contributors to the broader agenda of the sector.

Within the last three years there have been a number of major changes in the policy context within which palliative care sits. At the national level, palliative care is now administered through the Office for an Ageing Australia, perhaps reflecting an appreciation of the need for older people to also be provided with the opportunity to have a good death. The National Palliative Care Strategy is being updated, the outcomes of which are likely to impact on State and Territory policies and priorities.

Significantly, there has been a change in government which has a strong reformist agenda for health and care services. The National Health and Hospitals Reform Commission's recent report has as its central theme the importance of putting clients as the focus of all health activity, and the recognition of the need for a multi-disciplinary approach to people with complex care and health needs. These echo the fundamental aspects identified through the Care Planning projects.

This final evaluation report contains a series of recommendations which seek to highlight the lessons learned from the Care Planning Sub-Program, in terms of program management, as well as best-practice care planning, which are drawn from the aggregated lessons and conclusions of the 33 individual projects, as well as through the evaluation activities undertaken by the national evaluation team. Together they provide a blueprint for future activities to support the improvement of care for people with palliative care needs.

The full report is available
8936 - Care Planning Sub-Program: Findings from the national evaluation (531KB pdf).