Australians want to talk about death more with 90% of adults agreeing that talking to loved ones about their end-of-life wishes is important¹

Preliminary research suggests people are experiencing grief more strongly than before the pandemic²

The Dying to Know campaign encourages Australians to ‘get dead set’ on conversations and planning around end-of-life

Leading not-for-profit, The Groundswell Project Australia, is calling on Australians to ‘get dead set’ around death and dying as part of its annual Dying to Know campaign.

This year, the national campaign asks people of all ages and stages of life to prioritise compassionate conversations and ‘get dead set’ around the reality of death and dying – because it’s going to happen to us all. It outlines simple steps people can take around end-of-life planning, which is personal and unique to everyone.

The COVID-19 pandemic has changed how we live, die and grieve. Early studies suggest that people in Australia who lost a loved one during the COVID pandemic (from any cause) are experiencing more grief, anxiety and depression than before the pandemic.² Research shows there is a risk that the support received by Australians dealing with death and dying is less than what is needed.³

The Dying to Know campaign (which culminates on Dying to Know Day on 8 August) helps bridge this gap by improving death literacy and positivity in individuals, communities, healthcare workers and other professionals through local and community events. Death literacy is the knowledge, compassion and practical skills that enable supportive action and active decision-making around someone’s end-of-life choices.

To ‘get dead set’ is to prepare for the unique circumstances every person will face at the end of their life. By asking Australians to ‘get dead set’, the campaign invites Australians to overcome their fears or discomfort around death and take action on end-of-life planning in a way that is right for them. Australians can ‘get dead set’ in three key ways:

1. Capture your choices in writing. Like a will, substitute decision maker and guidance on your social media or organ donation. These could be documents, or as simple as a text or scribble on a serviette to start.
2. Have conversations with loved ones and others so they understand your wishes – and you understand theirs.
3. Prepare your send-off. Share what you want it to look like so you can be celebrated and remembered in line with your wishes. 

The benefits of planning for end-of-life are clear in the wake of necessary pandemic restrictions ­which impacted people’s ability to see dying loved ones, arrange or attend important rituals like funerals and see friends and family for support. By being ‘dead set’ and prepared for end-of-life, Australians can:

• Have a ‘good’ death which reflects what mattered in life.
• Have conversations to ease the anguish of loved ones through the distress, uncertainty, and finality of death.
• Leave a positive legacy that is consistent with how we want to be remembered.
• Have their lives celebrated/remembered the way they choose.

Cherelle Martin, Dying to Know Campaign Manager at The Groundswell Project Australia, says that not talking about death and dying is a significant obstacle to improving the how we live and die through end-of-life planning⁴.

“Death is often over-medicalised and institutionalised. Our superstitions, fears, discomfort and lack of knowledge about dying affect our approach to end-of-life. However, we know that Australians think conversations about death are important,” said Cherelle.

“People often feel ill equipped to act or start a conversation. The risk here for us all is that we do not have the knowledge or understanding around how to best support a loved one who is dying, caring or grieving. Sadly, this can mean that end-of-life experiences are not aligned with an individual’s values or wishes.”

“By normalising conversations around death and dying, Australians can ‘get dead set’. The pandemic has brought death and dying.  Our mortality is a part of our collective consciousness like never before. This is an opportunity to continue to strengthen our collective approach to these important matters.”

To register your Dying to Know event, find an event or access support for your end-of-life planning journey, visit www.dyingtoknowday.com. The campaign provides supporting resources and workshops to guide your discussions, and a toolkit to help promote your gathering or event.

People are also encouraged to join the conversation and share their experience via social media using the hashtag #GetDeadSet and #DyingToKnowDay. Don’t forget to tag @D2KDay on Facebook and Instagram.

Key statistics around death and dying:

• About 70% of deaths are expected⁴.
• Over 70% of Australians want to die at home, but only 14% actually do as it takes proactive planning to help to die at home^4,5.
• 52% of Australians don’t have a valid will in place⁶.
• While 90% of adults say that talking to their loved ones about their end-of-life wishes is important, only 27% have actually had these conversations¹.

This campaign is an initiative of The Groundswell Project Australia:

The Groundswell Project Australia’s vision is for our communities to help us live, grieve and die in line with our values. The not-for-profit aims to socialise death by encouraging Australians to bring to life conversations and actions to help shift the way we think about death and plan for our end-of-life.

References:

1. Sorrell JM 2021. End-of-life conversations as a legacy. Journal of Psychosocial Nursing and Mental Health Services, 56(1), 32–35. Available at: https://journals.healio.com/doi/epdf/10.3928/02793695-20171219-03
2. Lobb, L 2022. The “silent epidemic” of grief during the COVID-19 pandemic. Palliative Care Australia. Available at: https://palliativecare.org.au/story/the-silent-epidemic-of-grief-during-the-covid-19-pandemic/
3. Harrop E, Goss S, Farnell D, et al. 2021. Support needs and barriers to accessing support: Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic. Palliative Medicine. 2021;35(10):1985-1997. Available at: https://journals.sagepub.com/doi/10.1177/02692163211043372
4. Swerissen H and Duckett S 2014. Dying Well report. Grattan Institute. Available at: https://dyingwell.com.au/wp-content/uploads/2018/09/815-dying-well.pdf?msclkid=3a3a3901b59711ec82e88630d75b65bb
5. Australian Productivity Commission 2017. Introducing Competition and Informed User Choice into Human Services: Reforms to Human Services, Inquiry Report Overview & Recommendations. Available at: https://www.pc.gov.au/inquiries/completed/human-services/reforms/report/human-services-reforms-overview.pdf
6. Finder 2018. Research: 10 million Australians don’t have a will. Available at: https://www.finder.com.au/press-release-oct-2018-10-million-australians-dont-have-a-will