Dying to Talk Discussion Starter
Supporting you to talk about how you want to be cared for at the end of your life.
82% of Australians think it is important to talk to their family about how they would want to be cared for at the end of their life. Only 28% have done so.
You never know what the future holds. It is never too early to plan ahead. Talking now can help your family and friends in the future, and can make sure you get the kind of care that you want.
The Dying to Talk Discussion Starter will guide you through that discussion. It will help you prepare, so that you know what you want to say and it will provide you with tips about how to start talking.
Talking about dying might be hard, but it won’t kill you. You might even find that your family is dying to talk too.
Palliative Care Australia 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 this resource.
All resources provided by Palliative Care Australia (PCA) are for the purposes of providing information in relation to advance care planning and palliative care. All information provided is general in nature and people should consult healthcare professionals for advice about their specific circumstances, including the legislative requirements in their state or territory.
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. 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 ‘Advance Care Plan’ forms of each state or territory.
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.
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.
What matters most to you?
What is it that you can’t live without?
Thinking about these questions can help you think about how you want to be cared for at the end of your life.
Open up your Discussion Starter. It can be downloaded at the bottom of this page. The questions in Activity 1 are there to help you reflect about who you are and what is important to you. This can help you prepare for talking about your preferences for care at the end of your life. Take some time to reflect on these questions before you talk to your family. It may help you feel comfortable about what you need to say.
Tip: If you are having trouble with the questions in Activity 1, try the extra reflection prompts at the back of the document.
Tip: If you are still struggling, here are some other activities that can help you reflect on what is important to you.
- Write down 10-20 sentences about yourself. Look over them and see what they say about you. You might even like to share this list with your family.
See an example here.
- I love spending time with my family
- I am happiest when I am outside, or looking through a window
- I get overwhelmed in rooms that are very cluttered
- I like to read, and listen to audiobooks
- I love my dog and miss him whenever I go on holidays
- I like to be in control, and always want to know what is going on around me
- I am scared of needles and the sight of blood
- I get satisfaction from helping others
- Yoga relaxes me
- If I don’t put on moisturiser, my skin feels tight
- I am worried about how my family would cope if I got sick
- I like listening to quiet classical music
How does this help? Even this list can help others to make decisions about how to care for you if you were very sick. It tells me that you might like your dog to visit if you had to spend a long time in hospital. They might play classical music or audio tapes in your room. Making sure your family was cared for with meals and other support might ease your stress. Your doctor would know to provide you with very detailed information about options for your care, so that you would maintain some control over your life.
- List the three things that are most important to you in life. What are the things that you wouldn’t be happy living without?
Activity 2 in the Discussion Starter is all about having the discussion with your family or friend.
You might feel a bit worried about bringing up this topic. Many people do. However, our survey showed that over 82% of people felt it was important to talk with their family about how they want to be cared for at the end of their life.
Here are some suggestions to get you started:
“I have just filled out a questionnaire that I found online. It made me think about the things most important to me and how I would like to be treated if I got sick or was dying. Maybe you could do it too and we could compare answers”.
“I really hope that [insert person] received the care the way they wanted to when they were dying. I’ve been thinking about the kind of care I would want.”
“Now that you (or I) have been diagnosed with [insert condition], I want to make sure that we know each other’s wishes for care. Can we talk about this?”
Tip: Think about who you would want making decisions for you if you were not able to do that for yourself. Maybe start the discussion with this person. They may be in your family, or may be a close friend.
If you don’t feel like you have anyone to talk to, you can talk to your GP or health care worker. You can also write down your preferences so that people will know what kind of care you want. See Activity 4 of the Discussion Starter for more information.
You did it!
If you have reached this activity, you have probably had your first discussion with your family or friend about care at the end of your life.
How did it go? Do you feel like you were able to say everything you wanted to? Do you feel like they were willing to listen?
Think about what else you need to say, and who else you might like to talk to. You might want to make some notes in your Discussion Starter.
This first conversation is just the beginning. It gets easier every time.
You might change your mind about what you want at the end of your life. That is normal. If you do, you should let your family know.
As well as talking to your family and friends, there are other activities that you can do to plan ahead. Planning can reduce the stress for your family at that difficult time.
You don’t need to do them all. Think about what planning is right for you.
Document your wishes
Having your wishes written down can help make sure your care aligns with your wishes.
An advance care plan is a document outlining your end-of-life health care goals and wishes.
The Australian Government has developed a My Health Record, which is a place to electronically store important health information about you. You can upload your advance care plan to your My Health Record. This will ensure it is available when it is needed. You can attach this document or you can attach a legally recognised plan. To find out more talk to your doctor or go to palliativecare.org.au/advance-care-planning.
Identify your decision maker
You may have spoken to someone about the kind of care you want at the end of your life. You might have told them you want them to make decisions about your care if you can’t do it. It is good to document this.
Write down who you want making decisions for you.
Then make sure that others know your choice.
An Enduring Power of Attorney can legally identify a person as your chosen decision maker if you were no longer able to make decisions. This is particularly important where that person is not your legally recognised next of kin.
You can find more information palliativecare.org.au/advance-care-planning or talk with a solicitor, lawyer or financial planner.
Review your Will
Do you have a Will? Our survey found that over 50% of people don’t.
A Will is a legal document that communicates what you would like to have happen to your assets if you die. Not having a Will can create additional stress for your family.
If you don’t have a Will, or you haven’t reviewed it recently, think about whether you should do that now. More information can be found here.
Consider organ and tissue donation
People who need an organ or tissue transplant are usually very sick or dying because an organ is failing. If you want to donate your organs when you die, you should register your decision. You should also make sure that your family know about your decision and about why it is important to you. To find out more, go to donatelife.gov.au/decide.
Social media planning
Have you ever thought about what happens to your social media accounts when you die?
Each social media platform (for example Facebook, Twitter, Instagram or Google) has its own rules about what to do with your account when you die. Palliative Care Australia has developed a guide to help you with this.
Funeral and burial planning
You might think that preparing for your own funeral is a bit morbid. While it might be hard for you, it will be harder for your family when you die. If you can tell your family what you want, it might reduce arguments and stress at a time that will already be difficult for them.
Tip: If you are planning on taking out insurance, it pays to look carefully at what value you are getting. Other options might include pre-paying for your funeral or having a savings account set aside to cover the costs of your funeral.
Let a trusted person know where they can find things
If you have documents like an Advance Care Plan, a Will or life insurance policies, it is important your family can find them if you were not around. This may be a physical location or it may be on a computer.
Think about whether you want to tell someone where to find your documents and how they can access them.
Discussion Starter Tips
- The tabs on these pages walk you through the steps in the Discussion Starter. Use these alongside your Discussion Starter document.
- Download and save your Discussion Starter.
- You can print your Discussion Starter and fill it in. You can also complete it electronically and save your answers. You can even email them to a friend if you want.