386 End of life care for people with cystic fibrosis (CF)

Abstract

Objectives: To gage the need, understanding and wish to discuss Palliative Care (PC) and/or End of Life Care directive for PWCF with CF teams and/or family. To give PWCF the forum to discuss end of life care EOLC/PC if they so wish. To research best practices in our CF centres for EOLC/PC involvement. To support CF teams in any way possible through awareness and education on issues surrounding EOLC if needed. Method: This is an ongoing project; to date, – Meetings have been held with representative from the CFAI, Irish Hospice Foundation (IHF), CF Multidisciplinary Teams and CF Patient Advocate. – PWCF patient group held a teleconference meeting to discuss EOLC. – A questionnaire was developed and sent to CF centres to ask for their opinion and policies on EOLC. – A draft discussion paper for PWCF, CF families, and CF teams is available for comment. – A poster has been devised in conjunction with the IHF as a starting block for further research and education on EOLC/PC for PWCF. Conclusion: Doing this research has opened the doorway for discussion between CF teams, CFAI and patient groups. For PWCF it gives freedom to discuss EOLC issues freely with one another. The feedback received from the multidisciplinary teams to date will result in a stepping stone to support literature being developed for healthcare professionals caring for PWCF. Further discussions with psychologists working on CF multidisciplinary teams, with the aim of producing information leaflets on the issues surrounding EOLC. We have a produced a poster which identifies the main areas we need to develop as an association.