‘I have to live with the decisions I make’: laying a foundation for decision making for children with life-limiting conditions and life-threatening illnesses

Title

‘I have to live with the decisions I make’: laying a foundation for decision making for children with life-limiting conditions and life-threatening illnesses

Authors

Myra Bluebond-Langner, Darren Hargrave, Ellen M Henderson, Richard Langner

Published journal

Archives of disease in childhood (published by BMJ)

Abstract

The relationship between parents and clinician is critical to the care and treatment of children with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs). This relationship is built and maintained largely in consultations. In this article we lay out factors that bear on the success of clinical consultations and the maintenance of the essential clinician–parent relationship at progression or deterioration of LLCs or LTIs. We suggest an approach to engaging parents in conversations about care and treatment that recognises and appreciates the dilemmas which clinicians and parents face and in so doing provides a way for everyone to live with the decisions that are made. A close analysis of a consultation at progression and excerpts of encounters among parents, clinician and researcher are used to illustrate our approach to research, analysis and development of recommendations for clinical practice.