Communities changing conversations through Dying to Know

There is something powerful that happens when communities are given permission, space and support to talk openly about dying, death, grief and planning ahead.

Proveda, the stewards of Dying to Know Day, are acknowledged for their long-standing leadership in encouraging Australians to have more open, informed and compassionate conversations about dying, death and grief. Through the development of national resources, messaging and campaign assets, Proveda has helped communities and organisations across the country take part in this important work, and we are grateful for the foundation they have created.

Over the past year, Dying to Know events across the Central West of NSW have shown just how ready people are for these conversations. Across Mudgee, Canowindra, Orange, Bathurst and Dubbo, 431 people attended these community events, with an attendance rate of 91.7% from 470 registrations.

Of those attendees, 215 completed the Death Literacy Index measure (DLI 9) survey, helping us better understand the level of death literacy in our communities and what support people are seeking and the impact of the day. Participants recorded an average scaled mean score of 7.12 compared with the benchmark mean of 4.83, showing a result 47.4% above benchmark.

These are not small outcomes. They speak to strong community interest, meaningful engagement and the value of creating safe, thoughtful spaces for these conversations.

Built through collaboration

These events did not happen by accident. They were built through genuine collaboration.

Hayden Welsh and Anne Burns from the Western NSW Primary Health Network (WNSWPHN) and Preparing the Way: myself and Sarina Chapman (Sarina also represents Carer Gateway, who have been a significant contributor and presence at each event), formed the primary organising committee alongside several other local people joining each town based committee along the way.

Together, alongside local health districts, palliative care services, councils, community organisations and many generous contributors, we helped bring these events to life in ways that were locally relevant, practical and welcoming. We particularly acknowledge each of the local venue’s hosting the events who all contributed the cost of the venue and audio visual supports to benefit their communities.

The topics covered across the events reflected the broad reality of end of life conversations. They included advance care planning, grief and loss support, end of life doulas, legal information such as Enduring Power of Attorney and Enduring Guardianship and other documentation like Advance Care Directives, medicines information, palliative care, voluntary assisted dying, cultural history and end of life packages. Planning also involved collaboration with local health district teams, palliative care services, Carer Gateway, NALAG Grief and Loss Support, local councils, women’s health centres and neighbourhood centres.

More than information

What mattered most, though, was not only the information shared. It was the connection created.

Again and again, people told us these events were informative, valuable, well organised and deeply needed. One participant shared that the event “helped them build on previous knowledge, connect with friends is a safe space for conversations around life, death and all the spaces in between”, and “forge new connections with community organisations and the wider community”. Another said, “thank you for putting this together, there is so much interesting information to ponder and valuable resources to help start a conversation with family and friends”. Others simply said that “you do not know you need the information until you do”.

Why Dying to Know events matter

This is exactly why Dying to Know Day matters.

These events help normalise conversations that many people have been taught to avoid. They build practical knowledge. They reduce fear. They help people find services, ask better questions, and begin conversations with family, friends and providers before a crisis hits. They also strengthen relationships between health services, community organisations and local people. Western NSW PHN noted that these events have strengthened relationships between community, health organisations and the PHN itself, while also helping communities become better prepared, more connected and more confident in navigating end of life matters.

The team at Preparing the Way believe this kind of work should not stay local just because it started local.

Sharing the learnings

Sharing the learnings and the love. Creating the Dying to Know Event Kit.

Because of the success of these events, the organising committee are now in the process of developing a Dying to Know Day event kit. The heart behind it is simple. If something is working well and serving people, let’s share the love. We want to create a practical “how to” resource that can support other Primary Health Networks across the country, as well as Preparing the Way trained end of life doulas and communities more broadly, to collaborate and host their own events with greater ease, confidence and impact.

This kit is shaped from lived experience, trial and error, generous teamwork and a deep commitment to community education. It will include practical templates and tools such as meeting agendas, speaker invitations, requests for bios and slides, running sheets, flyer templates, approval processes, registration tracking, sign in sheets, dietary tracking and other key planning documents.

It will also include guidance on sponsorship approaches, menu ideas, invoicing to partner organisations, social media promotion, room and AV setup, welcoming guests, MC scripts, on the day logistics, and planning roles. We also hope to include support around using the Death Literacy Index, considerations for planning committees, and simple user friendly guidance on approaching local clubs, Rotary and other community partners for sponsorship and support.

In other words, we are not only celebrating what has been achieved. We are building something that can help others do it too.

For us, this is part of a much bigger vision. We want to support communities across our beautiful lands to become more death comfortable and death literate, more connected, and more able to meet end of life with honesty, compassion and practical support.

We want these conversations to become more ordinary, not more hidden. We want people to know their options. We want families to feel less alone. And we want our trained end of life doulas and local partners to feel equipped to help make that possible where they live.

That is the ripple effect of this work.

And it is only just beginning.

On behalf of Western NSW PHN, Preparing the Way, and Carer Gateway: Hayden Welsh, Anne Burns, Helen Callanan and Sarina Chapman.