Why quality in palliative care guidance for aged care matters
A blog post from Professor Jennifer Tieman, CareSearch Director, College of Nursing and Health Sciences, Flinders University
Published in 2005 and updated in 2006, the Palliative Approach in Residential Aged Care (APRAC) Guidelines were the first guidelines in the world that provided evidence based support for health professionals on providing palliative care in residential aged care facilities. A companion set of guidelines published in 2011 provided evidence based guidance for a Palliative Approach for Aged Care in the Community Setting (COMPAC). This landmark work acknowledged the importance of aged care as a setting in which palliative care needs would be found and also the impact of an ageing population on demand for palliative care.
Given the pressures on the aged care system and the reform agenda currently in play, there is a continuing need to ensure that current evidence and resources are available to guide care provision for older Australians as they approach the end of their life. Data from the Australian Institute for Health and Welfare reminds us that of the almost 245,000 people over 65 years who died in Australia in the 2 years to 30 June 2014, 80% had used an aged care program before their death. 
While Australia had led the way with aged care palliative care guidelines, guidelines need to be updated to ensure they incorporate new evidence for practice as it emerges and that they address new issues of importance in aged care and palliative care provision. In 2015, the Department of Health undertook a feasibility study to inform a proposed review of the APRAC and COMPAC Guidelines. This study found an ongoing need for a dynamic up-to-date evidence base to drive better practice of palliative care in aged care. The need for accessible and practical tools and support was also clearly expressed in contributions by stakeholders, as was the need to focus on better leverage and implementation of the existing large body of work in this space.  CareSearch (Flinders University) was approached to produce a guidance resource in 2016 and in May 2017 palliAGED was launched.
But what lies behind this resource? And how can users rely on its quality? The strength of guidance relies on the quality and rigor of the developmental processes. AGREE II is a widely used and validated tool that provides a framework for developing guidelines and a mechanism for assessing guidelines.  The AGREE II tool is one of a set of quality appraisal tools used by project staff to assess retrieved literature for inclusion in the web content. It was also used to frame the approach to the website development. Core elements of palliAGED’s processes highlight how it complies with the quality domains outlined in AGREE II. For example, the home page clearly articulates the scope, audience and purpose of the guidance. Two advisory groups oversaw the initial development of the website and its content while the current palliAGED Advisory Group continues to provide stakeholder involvement and multidisciplinary representation. There is also a transparent statement of the project’s quality framework which documents retrieval approaches, quality appraisal tools and processes and the role of expert peer review groups. Each Evidence Summary includes key messages and a statement of the quality of the underlying evidence while the Practice Centre translates the guidance for use addressing the applicability and utility of the provided evidence. Finally, the editorial independence of the project team is formally documented. Using the AGREE II domains shaped the design and development not just of the website but also the project processes. Much of this may not be recognised by the user but drives the processes that underpin the reliability of the provided guidance. Compliance certification with HONCode and inclusion as a Health Direct partner also demonstrate that the site produces balanced, unbiased content created and/or reviewed by subject area experts in Australia
palliAGED was designed to do guidance differently. This online palliative care guidance for aged care was launched in May 2017 by the Minister of Health as the palliAGED website. Two years on there are over 15,000 visits to the palliAGED website each month with more than 4,715 people registered for palliAGED news and more than 900 twitter followers. This response suggests that aged care recognises that end of life is part of life and that their care needs to incorporate palliative care. Having a strong and accessible evidence resource is part of the infrastructure needed to ensure that the need and demands for aged care are met and that quality care is provided across ageing, caring, dying and grieving for all Australians.