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

Abstract

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.