WS09.10 “Writing for the future”, addressing the challenges of family communication at the end of life in cystic fibrosis

Abstract

Objectives Three hundred patients attend the Adult CF Centre in Belfast. There are around 100 children who have a parent with CF. There is an unmet need in individuals with disease progression and facing end of life as to how best to communicate this difficult situation to their children and how to prepare for life without them. Our objective was to develop a personal “writing for the future” book that could be shared between patients and their children. Methods We engaged with a volunteer counsellor who was supported by the Belfast City Hospital and the UK CF Trust. We identified 5 patients approaching the end of their life and offered this service, all engaged. The counsellor and patient undertook several conversations that were recorded. Various themes emerged depending on the individual but could include their own childhood, challenges they faced, happy events and advice for their children as they grow up without them. Results This “writing for the future” was transcribed and presented in a professionally bound book with photographs. The patients then shared this with their families. A patient on reflection with his daughter said, “She will always be secure in the knowledge of my love for her”. Following the patients’ death their children had a tangible memory book and found great comfort in the words. Conclusions We have had overwhelming support from patients and their families for this initiative. This novel approach can sensitively aid the challenging conversations within a family at end of life and helps to prepare their children for the future. We continue to develop this service and would support its initiation in other CF centres.