Thinking about the end of your child’s life is extremely difficult, and requires a lot of emotional strength.
However, a strong message we’ve heard from families over the years is that if you make choices in advance of your child’s death, when your child’s final days to come, you can concentrate on supporting each other and dealing emotionally with the situation, rather than having to think about practicalities and make important decisions at this time.
Planning ahead also means that you can explore all the options, and find out exactly what is possible, so you can make informed choices.
Here’s a checklist of what you should expect at this stage:
- Professionals should be open and honest when the approach to end of life is recognised
- Joint planning should take place as soon as possible with your family and the care team and a written end of life care plan should be agreed
- Reviews of the care plan should occur to take account of changes
- 24 hour access to pain and symptom control should be available, including access to medication and suitably qualified and experienced practitioners
- Emotional and spiritual support should be provided for you and your family
- Support should be provided for your child and family in their choices regarding end of life
Information to support you as you prepare for this difficult time is available in a range of resources developed by Together for Short Lives.
Pages 31-29 of our Family Companion contain more information about end-of-life planning
Making Critical Care Choices
This resource helps you make informed choices and decisions around end-of-life planning for your child
Care planning in advance
This resource discusses anticipatory care planning as your child approaches end-of-life