About Dying to Talk
What if you unexpectedly became very sick?
Palliative Care Australia (PCA) commissioned a national survey for National Palliative Care Week 2019, which indicated that Australians are not preparing for the end of their lives. The survey of 1,003 Australians, conducted by Pure Profile, found that eight in ten Australians think it’s important to talk about their end-of life care wishes, but only one in four have actually had the conversation.
The results of the survey highlighted a disconnect between what people think and do. Dying to Talk encourages all Australians to talk about dying no matter your age, background or current health. Despite being something that touches everyone, death doesn’t receive enough visibility.
Dying to Talk aims to reach into the community to normalise early conversations about the end of life, rather than waiting until more time critical or medical focused discussions need to occur. The resources have been developed to help Australians work out what’s right for them if they were very sick or at the end of their lives.
It might be hard for you to think about, but you might even be so sick that you cannot communicate. Talking with your loved ones about what you want can help you, and them, when making decisions now and in the future. Many things are important to us and make our lives fun or fulfilling. Some things might be well-known to people, for example, your love for your family. But people may not know other things important to you, for example, cultural practices, what type of care you might like to receive or where.
Early conversations can improve the delivery of culturally appropriate and person-centred care. With more conversations comes better support for people nearing the end of life, and their loved ones.
Thinking and talking about the end of your life can be hard and it might help to talk to someone. Your doctor or other health professionals involved in your care are available to talk to. They can help you work out who you can contact if you have any questions or concerns.
Talking about dying might be hard, but it won’t kill you. You might even find that your family is dying to talk.
How the Dying to Talk Campaign has grown
The Dying to Talk Campaign was launched by PCA in 2015, to encourage Australians of all ages and health status to talk about death and dying. The resources included a Discussion Starter and Discussion Cards, and became known as the ‘dinosaur’ resources due to the distinct origami dinosaur characters that are the stars of the Campaign. Development of the Campaign was funded by the Australian Government.
PCA has also held an annual art competition (online or physical exhibition) since 2016, to provide a platform for Australians to express their emotions surrounding loss, grief or coming to terms with their own illness.
In 2017, PCA expanded the Dying to Talk resources by developing an Aboriginal and Torres Strait Islander Discussion Starter and Card Activity. This was done in partnership with the Congress of Aboriginal and Torres Strait Islander Nurses and Midwives (CATSINaM) and in consultation with other Indigenous health organisations, who identified the need for a specific resource for Aboriginal and Torres Strait Islander people.
With funding support from the Australian Government through the Dementia and Aged Care Services Fund, PCA further added to the Campaign at the end of 2019 by releasing the ‘What Matters Most’ resources. These materials were informed by a research study involving Dementia Australia, HammondCare and the Australian Catholic University. The materials have tailored Discussion Starter and Discussion Cards specifically for older people, including people living with dementia, who use community and residential aged care services. In addition, there are resources for health and aged care workers, and the Discussion Starter and Discussion Cards have been translated into the following languages: Arabic, Croatian, Greek, Hindi, Italian, Maltese, Polish, Simplified Chinese, Spanish and Vietnamese.
At the start of 2020, PCA will be releasing an updated version of the original ‘dinosaur’ Discussion Starter and Discussion Cards, and a new Health Professional Facilitator Guide. These resources have drawn on feedback since the 2015 launch, as well as the outcomes of a research study in collaboration with the Rural Flying Doctor Service, with funding support from the Australian Government through the Dementia and Aged Care Services Fund.
In addition, there will be more supportive resources coming, as PCA acknowledges there are many individuals, organisations and communities who are Dying to Talk Together and are looking for some ideas, tips and guidance on how to get this started – stay tuned!
Palliative Care Australia (PCA) thanks The Conversation Project and the Institute for Healthcare Improvement in Boston, MA, USA. Their Conversation Starter Kit is in many ways the inspiration for the original 2015 Discussion Starter.
PCA also respectfully acknowledges that the Dying to Talk Discussion Cards was guided by Coda Alliance’s Go Wish card game developed with the Archstone Foundation.
Any resource provided by PCA for the purpose of the ‘Dying to Talk Campaign’ is strictly informative and should not be considered as legal advice or legally binding. All information provided is general in nature and people should consult healthcare professionals for advice about their specific circumstances. PCA makes every effort to ensure the quality of information provided however will not be liable for any loss or damage suffered by any person arising in connection with any information provided.
None of the resources or forms provided by PCA for the purpose of ‘Dying to Talk Campaign’ should be considered as a substitute for the prescribed or recommended Advanced Care Plan or Advance Care Directive requirements of each State or Territory. People should always consult healthcare or legal professionals for advice about their specific circumstances, including the legislative requirements in their state or territory.
For additional information relating to advance care planning, please speak to your health professional, visit the Advance Care Planning Australia website www.advancecareplanning.org.au or call the Advance Care Planning Advisory Service on 1300 208 582, 9am – 5pm (AEST) Monday to Friday.