The 2018 National Palliative Care Strategy is a commitment by all Australian governments to ensure that evidence-based, quality palliative care is available to everyone who requires it. A commitment that we at CareSearch share.
The strategy is a promise to the Australian population that as with the beginning of life, in death and dying they will be supported and valued. The six guiding principles and seven goals outlined in the strategy not only provides the vision but a framework of actionable outcomes on what people with a life-limiting illness should expect and on what providers of care and governments should deliver. This gives authority for patients, families and carers to understand, access and advocate for needed care. The strategy also reminds us that patients and families cannot do this alone, it takes an informed and equipped community.
Palliative care is about supporting the individual with a life-limiting illness to live the best life they can with dignity until they die. An important part of this is access to reliable information about care and services wherever you live, and whenever and whatever your needs. CareSearch is a digital native, having provided 24/7 online access to evidence-based information in palliative care since 2008. With the announcement of new funding for the 2020-2023 period, the CareSearch team is keen to continue our work in supporting Australians and contributing to the delivery of the National Palliative Care Strategy. Here we highlight how we plan to do this in step with current and future needs.
CareSearch has long recognised the need for palliative care information and resources across the life course and across the system. Providing access to relevant evidence in varied formats to ensure high-quality and evidence-based best practice in palliative care is for us core business. It is also one of the six strategy principles. But we understand that for those at the face of care delivery both time and resources are often limited. In 2020-23 we will restructure our Finding Evidence section into an Evidence Training and Translation Centre to facilitate access and use of evidence and research where it can make a difference. Already providing information and resources for GPs, nurses, and allied health, we will also work to broaden the GP Hub to encompass the multidisciplinary primary health care context. In so-doing CareSearch will reflect real-world practice where everyone has a role to play in palliative care.
In palliative care ‘everyone’ includes informal carers who might be a spouse, child, parent, neighbour, or friend. In Australia it is estimated that there are 2.7 million informal carers, and this includes carers providing palliative care for a loved one at the end of life. As part of a planned restructure of the website in 2020-2023, existing CareSearch resources for Patients and Carers will be highlighted and strengthened to ensure carers are valued and receive the support and information they need. In 2020-2023 we will also move towards even greater profiling of our many partner projects to promote carer awareness and access to the varied support available to them.
Our planned expansion in 2020-23 of resources to improve support and understanding of Australia’s diverse population is aimed at improving access to palliative care and keeping care person-centred. Every person’s voice needs to be heard if their preferences and values are to be respected and care truly person-centred. Acknowledging the need and potential barriers to access are the first steps towards having that conversation.
In 2020-23 we also want to encourage people to engage with earlier end-of-life discussions by creating a new interactive online resource around normalising death and dying. Our aim is to foster open conversation and understanding across the community that dying applies to everyone and yet remains personal. Being prepared for this allows us to focus on the people and activities that matter when time is short. This work will draw on our experience in developing and delivering the highly successful Dying2Learn MOOC.
So, the next three years will see us grow and mature with an eye on the future and in response to changes in community expectations, needs, and practices. Changes that will bring us closer to realising the vision set out in the National Palliative Care Strategy. Our current Part of Life Project highlighting the six guiding principles has provided the perfect platform to raise awareness of the strategy and we look forward to working closely with you to make a difference in 2020-2023.
Dr Katrina Erny-Albrecht, Senior Research Fellow, CareSearch, College of Nursing and Health Sciences, Flinders University