When you've been told your child is going to die, you will need to think about where you would like your child to be cared for towards the end of their life.
Where will my child die?
Many children and young people are happiest at home. However, this may not feel right for you as a family, or it may not be possible for your child to have the level of medical care that they need at home.
You have choices so try to discuss the views and opinions of all family members. These choices may well alter with changes in your child's health.
You can ask your the team caring for your child, or your CLIC Sargent Social Worker, for advice about hospice care for children and young people. It may be possible to arrange a visit to a local hospice to help you decide if this would be a good choice for you. Your hospice may also be able to accommodate short family stays.
Siblings may appear to be managing well and to be carrying on as normal. However, they could be feeling vulnerable and just trying to be brave and strong. They might need extra reassurance and comfort and to feel that they understand things that are happening and are being included in any decisions.
Children and young people react in many different ways. You can discuss any concerns you might have with the staff caring for you and your family. They will be happy to listen to any worries and to offer you support.
How will my child die?
You may have lots of questions and anxieties about how your child will die. Be aware that it may not be possible for anyone to know exactly how this will happen. What you can expect is that everyone involved in your child's care will talk with you honestly and with respect for your fears, your wishes and feelings.
This time is very precious - use it to make good memories.
Will my child suffer?
The team looking after your child are highly skilled and experienced. They will do everything that they can to ensure that your child is peaceful and comfortable at all times.
What can I do to help?
Doctors and nurses can help you be closely involved in the care of your child, if this is what you want. They know that you are the expert when it comes to looking after your child and will listen to your views.
If you are thinking about complementary therapies to help to manage your child's symptoms it is advisable to discuss your plans with the staff looking after your child. They can advise you on the best way to introduce and use these therapies. It's always best to take advice from medical staff if you are considering introducing any medicines or therapies other than those prescribed by the specialist team.
How will I cope?
It's normal to feel that you are facing an impossible and overwhelming task. You may be wondering how you can possibly cope with the pain of your situation. You may find support through family, friends and your community, and you will have the skills and knowledge of an experienced team who will help you and guide you through the choices ahead of you.
Reviewed July 2014, next planned review 2017