Dying to Talk Discussion Starters Parent
Working out what’s right for you
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 start to think about things and plan ahead. The Dying to Talk Discussion Starter will guide you through that process. It will help you prepare, so that you know what you want to say and to who, and it will provide you with tips about how to start talking.
Planning ahead can be helpful and it is easier to do this planning when you are well. Talking about the type of health care you might prefer will help others to understand your wishes and help them to make decisions for you if they ever need to. Even though you might find this discussion a bit hard now, it will make their decisions less stressful later.
Which Discussion Starter is for me?
That’s up to you!
PCA has listened to feedback since the start of the Dying to Talk campaign in 2015, and has developed a lot of resources to help people start conversations. While the design, order of sections and some of the information may have been adapted or updated across resources, they all can be used to get you started.
So if you prefer dinosaurs, the beautiful artwork by Allan Summer in the Aboriginal and Torres Strait Islander materials, or artist Les Maki’s lovely artwork in the ‘What Matters Most’ resources, the important thing is to work out what is right for you.
For more information about the Dying to Talk Campaign see here
Some important things to think about:
- There are no right or wrong answers – this is about what you think and what you want.
- You can change your answers at any time.
- You might want to come back and think about the questions again later.
- You do not have to answer all of the questions.
- You can answer some questions now and some questions another time.
- Sharing your answers may help those around you know what you would and would not want, if you could not tell them.
- Being given the Discussion Starter doesn’t mean you are about to die.
You may also want to look at the Discussion Cards to help you identify what is important to you.
After you have worked through the Discussion Starter, you might want to talk to someone about what you have written down. You could talk to your family, friends, doctor or other health professional.
It is important to know that the Discussion Starter is not a legal document or an Advance Care Plan / Directive. 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.
People should always consult healthcare or legal professionals for advice about their specific circumstances, including the legislative requirements in their state or territory.
This section of the Discussion Starter is about you!
It may be called ‘Reflecting’ or ‘About you.’
The questions in this section can be the hardest ones to answer.
The questions 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 more comfortable about what you need to say.
Tip: You may also want to look at the Discussion Cards to help you identify what is important to you.
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?
It is important to remember:
- There is no right or wrong answer.
- You do not need to answer all of the questions, only the ones you are comfortable with answering.
- You can return to a question at a later time. There is no right or wrong order in which to go through the questions.
- It is OK for you to change your mind.
- It is OK to feel sad or another emotion, and you can stop at any time.
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.