Table 2.
Topics Covered in the Parent Resource Caring Decisionsa
| Chapter heading | Subsections in each chapter |
|---|---|
| Introduction | How common are decisions about life support for children? Why should I read this handbook? Is this handbook relevant for my child? How should I read this book? Why am I being asked these questions? It is not given to me to decide about life? Starting a conversation with your child's doctors. ‘The bigger picture.’ There is too much to think about … I don't understand … Support at a stressful time. Terms used in this handbook. |
| How do parents think about end-of-life decisions | Nil |
| Life support treatment | What is life support treatment? Are there different types of life support treatment? |
| Comfort treatment and palliative care | What is comfort treatment and palliative care? Is palliative care just for children who are dying?Can a child have comfort treatment and life support treatment? |
| Stopping life support | Why would doctors want to stop life support treatments for my child? Are there different reasons for stopping or not starting life support treatment? Is it legal to stop or not start life support treatment? Is stopping treatment euthanasia? What is futile medical treatment? Futile treatment and the dying process. Questions you could ask. |
| Stopping and not starting | Is there a difference between stopping treatment and not starting treatment? What if I still feel uncomfortable stopping life support treatment for my child? What is a ‘trial of life support treatment’? Questions that you could ask your child's doctors about treatment. |
| Different types of treatment | Are decisions different for different life support treatments? Is it OK to stop some life support treatments but continue others? What is a DNAR or AND order? If I agree to a DNAR order for my child will other people know? What will other people think of me if I agree to a DNAR for my child? If I agree to a DNAR will other treatment stop? What if I change my mind? What if I decide that I want doctors and nurses to provide CPR for my child? I want everything to be done. Is it OK to stop artificial feeding? Is it legal to stop artificial feeding? |
| Doing what is best | What is the right thing to do? How do we work out what would be best? Should I ask my child? What if my child doesn't want life support treatment? |
| Quality of life | What is ‘quality of life’? Is it appropriate to use quality of life when making decisions for children? Are all ‘quality of life’ decisions the same? Are ‘quality of life’ decisions different in children? What about the ‘sanctity of life’ approach? Isn't life sacred? Is it discriminatory to stop life support treatment based on ‘quality of life’? Is quality of life a ‘personal’ decision? Questions you could ask your doctor. |
| Uncertainty | Can the doctors be certain about what will happen for my child? Questions you could ask your doctor about uncertainty. Ways to think about uncertainty. Is there a rush to make a decision? Do I need to decide now? I have read about a new treatment/test on the Internet. |
| Who decides about life support? | Who makes the final decision about life support treatment? What does shared decision making mean? Questions you might like to ask your doctor. Phrases that may be helpful. What if I don't want to decide? Do parents need to consent to stopping treatment? What would you do, doctor? |
| Disagreement | What should I do if the doctors don't agree about life support? What should I do if I don't agree with my child's doctors about life support? What should I do if my partner and I do not agree about life support treatment? What should I do if others in my family do not agree about life support treatment? |
| Religion, culture, and life support | Is it against my religion to stop life support? Is it playing God to stop life support? What about the sanctity of life? I don't want to stop life support because I am waiting for a miracle. Can I talk to my doctor about my cultural or religious beliefs? Can I ask doctors to speak to my elder or religious advisor? What do different religions say about stopping life support? |
| After a decision | We have decided to continue life support. What will happen now? We have decided to stop or not start life support. What will happen now? What happens after a breathing tube is removed? If my child has morphine, will it stop him/her breathing? How long do we have? What about organ or tissue donation? What do I do about organizing a funeral? |
| Taboo questions | What if I had …? If only I had. … Is it bad to wish for my child to die? Can't the doctors give my child something to put them out of their misery? Do doctors want to stop life support for my child because it costs too much? Is stopping life support treatment giving up on my child? Is there no hope? The doctors cannot be right. They must have made a mistake. If I agree to stop life support, will people think I am a bad parent? Will we be abandoned? Will I be letting the doctors down if I agree to stopping or not starting life support? What about the rest of my family and their quality of life?I am afraid that I won't be able to cope if. … Did I make the right decision? Will I be able to live with myself? |
| What to tell other people | Should I say anything? What do I tell other people about life support? What do I tell my other children? |
| Further information |