End of Life Planning

It is essential to discuss End of Life planning at the right time and place with the family. It needs to be in their time and not our time. Sharing significant news with parents and children should be seen as a process, rather than a one off event. Before, during and after the session are all key times and it is important to see it as a whole process, which will continue in the minds of the parents and the child.

There are a number of documents that provide information on end of life care: The ACT Family Companion to the ACT care pathway is the most important document for families. This covers the three ACT pathways and the Prompts for care at end of life comes from these documents. The document 'A Framework for sharing significant news' could help professionals in undertaking these conversations. Here you will find a checklist that could be used for discussing End of Life Care with the parents/carers of a child with exceptional healthcare needs.

The content of this meeting should cover what the family want to happen at the time of death and the place of death. It should look at what the family want to do after the death ? who do they want to be there and where do they want their child to rest. This can be a difficult conversation, but the sooner it is done, plans are made and then put away, so the family can get on and look after their child and any other siblings. We often put this conversation off, but that can be a big mistake.

Useful web sites:

Useful documents:

End of Life Planning

Contact Us