Dr Priyanka Vandersman

Senior Research Fellow, ELDAC Project
Member of Research Centre for Palliative Care, Death, and Dying, Flinders University​

​​Globally, digital transformation has been sweeping through healthcare in recent years and Australia’s health and social care landscape is also undergoing rapid digitalisation. The Australian Government's National Digital Health Strategy 2023-2028, [1] along with its corresponding Delivery Roadmap, [2] outlines several key initiatives aimed at fostering a digitally empowered care environment within aged care. Significant systemic and policy-level shifts including the Aged Care digital transformation agenda, the national interoperability plan, and the integration of My Health Records into aged care clinical systems are driving a digitally enabled aged care environment. 

​However, this systemic upliftment of digital infrastructure and systems is unfolding against the backdrop of a rapidly evolving care and regulatory landscape. The recommendations from the Royal Commission into Aged Care 2020 have ushered in significant changes to the aged care sector, including the revision of the Aged Care Act of 1997, the strengthening of Aged Care Quality Standards, and the introduction of additional mandatory reporting requirements. Simultaneous transformation of the digital, care, and regulatory realms presents challenges for the sector in keeping pace with the rapid changes. 

​The latest Report on the digital maturity of aged and community care [3] highlights the ongoing need to enhance the digital maturity of the sector and identifies opportunities for innovation and improving staff's digital readiness. Amidst these changes, it is imperative to remember that the intent of changes both during and arising from the changes in the digital and regulatory spheres, is quality care for clients and residents. As a sector, we need to look at how we can optimize innovations that align with regulatory changes, and which alleviate current and future challenges. 

​At the core of digitally connected care lies quality data. While a considerable portion of the aged care workforce utilizes digital approaches for data collection, entry, or use, there is still much to explore in terms of data integration and transformation to support care. Changes are underway in the aged care data landscape with the adoption of Fast Healthcare Interoperability Resources (FHIR) and the development of the National Aged Care Minimum Dataset [METEOR]. [4] What is needed are innovative solutions that are not only effective today but also future-ready, designed to facilitate the sector in providing high-quality care by harnessing the power of technology to meet upcoming regulatory and reporting requirements. 

​Developing digital solutions must address work practices in meaningful ways, consider the reporting requirements for services, and enable access to real-time data. The ELDAC project is looking at how to support palliative care and care at the end of life in the aged care sector. As part of this work, we have designed and tested a palliative care dashboard, that aligns with the pending revised Aged Care standards and with the definitions of the aged care minimum data set. By enabling IT providers to map, extend, and/or integrate their existing data capture, the dashboard offers care providers an evidence-based framework that uses their data to inform care delivery and service review and reporting. The dashboard showcases how the concurrent evolution of the digital and regulatory landscape can be leveraged to support innovation and outcomes in the sector. 

​To find out more about the ELDAC Digital Dashboard, please email eldac.project@flinders.edu.au 

*The views and opinions expressed in Knowledge Blogs are those of the authors and do not necessarily reflect those of ARIIA, Flinders University and/or the Australian Government Department of Health and Aged Care.

Suzanne Sara

Clinical Nurse Specialist, leading the Last Days workshops
​​The Dementia Centre, HammondCare​ 

​Felicity Burns

General Manager, Health and Hospitals
​​The Dementia Centre, HammondCare​

​​Why aren’t we more comfortable discussing the inevitable topic of death and dying?

It is a reality we all must face, yet many of us have little exposure to death and shy away from these conversations.

​Our discomfort often stems from a mix of fear, cultural influences, emotional strain, uncertainty, communication hurdles, and coping mechanisms. 

​Nevertheless, having open and honest discussions about dying can bring significant benefits to both the person at the end of life and their loved ones. These conversations offer opportunities to express feelings and wishes, address fears, and make plans for end-of-life care.

​In 2021, a pilot program aimed at providing carers of someone in their last days with practical knowledge and resources found that all participants reported an increased understanding and awareness of what to expect when someone is dying. Last Days, a community-based program, was developed from this pilot and is designed to equip carers for what lies ahead.

​While many of us may not have practical knowledge about dying, a gap that can be particularly pronounced is in rural and regional areas where palliative care support services may be scarce. In recognising this need, the Last Days program is expanding its reach to these underserved communities, aiming to provide much-needed support and resources.

​Family members and carers of someone at the end of life often feel isolated and overwhelmed as they navigate unfamiliar territory, making programs like Last Days essential in empowering them with knowledge and tools to provide compassionate care.

​The workshops offer practical guidance and link to local palliative care support services, ensuring that carers have access to resources throughout their journey.  

​Palliative care plays a crucial role in improving the quality of life and the dying experience, yet access to these services remains unequal, especially in regional areas. Last Days program is vital in bridging this gap, providing families and caregivers with education and assisting in navigating end-of-life care with confidence and compassion.

​In a country where approximately 160,000 people die each year, it is imperative that we equip carers, families, and communities with the knowledge and resources to provide quality end-of-life care to all. By breaking the silence and fostering open discussions about death and dying, we can ensure that everyone has the opportunity to approach the end of life with peace, dignity, and compassion.

​ Palliative care requires health professionals and the person, along with their family and carers, to maximise quality of life, care planning, facilitate end-of-life conversations, and manage symptoms. In regional Australia, where workforce shortages and vast distances mean palliative services may be limited, programs like Last Days equip families and carers with this education can make a huge difference.

​To find out more about Last Days Workshops in your area, visit https://www.hammond.com.au/palliative-centre/last-days-program

​*The views and opinions expressed in Knowledge Blogs are those of the authors and do not necessarily reflect those of ARIIA, Flinders University and/or the Australian Government Department of Health and Aged Care.

​Sarah Judd-Lam and Francisca Loyola-Sandoval​

Carers NSW

​As anyone working in aged care will have experienced, family and friend carers have a vital role as partners in supporting the wellbeing of the older person, both in residential and home care settings, and when accessing services such as respite care. Family and friend carers provide support in myriad ways, including physical, social, emotional, and financial support; typically taking on roles as advocates and substitute decision makers. [1] Adopting an evidence-based approach to support and enhance these crucial carer relationships is vital. However, implementing best-practice approaches and referrals to address the unmet needs of carers can pose challenges for aged care providers, especially when their primary focus is on the older person who is their funded client. 

​Sarah Judd-Lam, Executive Manager Policy, Development and Research at Carers NSW, describes how the Carer Knowledge Exchange can bridge the knowledge gap for aged care providers and their staff, connecting them to research, and creating awareness on how best to support family and friend carers.   

​She says, “the Carer Knowledge Exchange (CKE), a collaboration between Carers NSW and the Institute for Public Policy and Governance at the University of Technology Sydney, is now making it easier to access the carer evidence base, and to find and share experience and expertise to improve outcomes for family and friend carers across Australia. Proudly funded by the NSW Department of Communities and Justice, the CKE includes a research library, regular interactive events and webinars, and opportunities to connect with others via a Discussion Forum and Carer Hub “ 

​The Research Library hosts searchable Australian research on diverse carer-related topics. Aged Care Services from Afar: What matters to Australian Long-Distance Care Givers [2] and Mental health outcomes of carers during the transition of their family member to residential aged care [3] are just two examples of the many articles available that would interest aged care providers and staff.    

​The catalogue of CKE webinars continues to grow, with a wide range of topics on offer, sharing the expertise of researchers, practitioners and carers, and emphasising the importance of evidence. As Laila Hallam, Chair of the Consumer Leaders in Health Collective explained in a CKE webinar on Carer Engagement in Health Care Settings, “If you are articulating a particular position, it can be seen as an opinion. What we’re trying to do is put knowledge behind that. It’s really important that it’s not just my voice saying something, it’s able to be backed up, there are a few ways of doing this, and evidence is one way”.  

​Sarah Judd-Lam explains that “the Carer Knowledge Exchange aims to be accessible to everyone, including practitioners, and family and friend carers themselves, with opportunities for them to help shape research and advocacy, and learn from the work of others to inform their own caring role.” 

​The next CKE interactive webinar ‘Empowering carers when systems are complex’ will explore how carer empowerment can be promoted and sustained in service settings with a focus on ongoing reviews and reforms in the disability, Aged Care, and carer support sectors - Wednesday 21st February 2024 from 10.30am to 12.30pm. Register at https://bit.ly/CKE_Webinar8

​You can also learn more and stay in touch with the CKE by signing up to the CKE mailing list or following on Facebook or LinkedIn.

*The views and opinions expressed in Knowledge Blogs are those of the authors and do not necessarily reflect those of ARIIA, Flinders University and/or the Australian Government Department of Health and Aged Care.