This is by far the most difficult and testing time of the journey. You will need to be emotionally strong to face this stage and you should make decisions before you get to this stage for your child’s and your families needs.
Here at The Happy Smile Children’s Charity we have heard many times the strong message from families that you should make decisions prior to child’s death about what will happen when the time comes.
The reason families have told us this over the years is because when the time comes and your child dies you need to be there supporting each other and you can concentrate on the situation in hand and focus on trying to emotionally deal with what has happened instead of trying to make hard decisions at the drop of a hat when you are all over the place. The things to discuss would be organ donation, would you remove IV lines and/or feeding tubes to allow your child to die naturally. No decision you make is wrong but it needs to be the right one for your family and your child.
Planning for the possibility of your child dying means you have time to ask questions prior to that stage and fully understand all the possibilities and what your options will be at that stage.
Your child will also be able to make an input on what they would want for their funeral, they might have a unique or quirky idea that they really want. They might want to be involved in the decisions about their end of life treatment, it also gives them the opportunity to ask questions and talk about the worries they have.
When preparing for end of life care your health care professionals should be involved and together you should put together a detailed plan about what you want and what will happen at each potential stage. You might want your child at home or in a hospice when/after they die, you might require special religious rituals to be carried out at the end of your child’s life. All these things should be in the end of life care plan. Together For Short Lives has a factsheet that may help you when you are deciding a critical care plan for your child.