Planning for the end of children's lives - the lifetime framework

Aim This paper describes the development of 'a best practice framework', following review of a sample of notes of children known to the Lifetime Service, where the child has a non-malignant life limiting condition, to improve child and family engagement in the planning process at the end of life. Background There is very little literature about how to engage with families to decide end of life plans for children with life limiting conditions. Method An audit of clinical case notes was followed by the development of 'a best practice framework' through a Delphi process involving clinical practitioners. Results The 3 x 3 framework is presented to aid communication with parents and children at this difficult time of decision-making. Conclusion This new framework has been well received by both parents and practitioners, and its use will be audited in the future.