All too little, all too late: Improving Australia’s end-of-life experience

(l-r) Stephen Holmes, CEO Goodwin Aged Care, Melissa Reader CEO Violet, Prof Imogen Mitchell, Head Intensivist, The Canberra Hospital, Paul Sadler, Kate Carnell AO, Chair Violet.

A report by the Violet Initiative, titled ‘All too little, all too late: The experience of the last stage of life across Australia,’ was launched in Canberra earlier this week by Kate Carnell AO, Violet Chair and former Chief Minister of the ACT.

The review presents crucial insights and actionable outcomes designed to improve the end-of-life experience for individuals, families, and healthcare providers. It also has surprising statistics (below statistics from the report) to do with the majority of people who spend their last days in hospital, white often contrary to their known preferences.

The Violet Initiative, a national not-for-profit organisation, is dedicated to transforming the final stage of life. Violet was awarded Highly Commended in the 2022 Future of Ageing Awards for Service Transformation. (Entries for the 2024 Future of Ageing Awards are currently open.)

As Australia’s population ages and the annual number of deaths is projected to double by 2040, Violet argues that current systems and social norms are inadequate. The organisation aims to bridge humanity and technology to tackle these issues at scale.

Violet’s innovative approach includes a technology platform, a national network of Violet Guides, training and education programs, and the soon-to-be-released AI-enabled Companion. These resources offer personalised, empathetic, and scalable solutions accessible to all Australians, regardless of location or time.

In partnership with Canberra-based Goodwin Aged Care since 2022, Violet has been enhancing the skills and support of Goodwin’s workforce through specialist training programs. This collaboration also supports family members and caregivers as they navigate the last stage of life with their loved ones.

Violet’s research highlights the profound impact of end-of-life and post-death care quality on a family’s grieving process. Families often begin grieving as soon as their relative enters aged care, with their grief intensifying over time. Engaging families in the care process, maintaining open communication about health decline, discussing care options, preparing for death, and providing post-death support are essential components.

The emotional toll on healthcare workers frequently exposed to death is significant, impacting their performance and interactions. Studies correlate high death rates with increased absenteeism, presenteeism (being physically present but mentally absent), and burnout, further straining the healthcare and aged care sector.

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