Palliative Care
Background
A discussion document on End of Life Care for People with CF was prepared by the Cystic Fibrosis Association of Ireland in conjunction with the Irish Hospice Foundation in order to create more awareness of the issues in this area, to promote discussion within the community, and to seek consensus regarding how we can better support and address the end of life needs of PWCF and their families.
The key areas examined include introduction of discussions around end of life care, expressed wishes of PWCF, palliative care involvement and bereavement. Please click on the following link if you would like to read this document in full: End of Life Care for People with Cystic Fibrosis
Update
The CFAI disseminated the findings of this document to CF Centres throughout the country in August 2010. Specialist Palliative Care teams in the community and views of the PWCF Group were also sought. We are currently reviewing feedback received, and preliminary comments suggest that this document has certainly raised more awareness and encouraged further discussion on the end of life needs of PWCF.
A summary of progress on this topic to date, as well as a a brief outline of the proposed recommendations and actions of this report, can be accessed at the following link: End of Life Care for People with Cystic Fibrosis - A Summary
Advance Care Directive
Eleanor Walsh, PWCF, has written an article about the many life choices that face people with CF, and particularly those decisions affecting end of life. So what is an Advance Care Directive? Although there are no precise definitions, it can be thought of as an advance decision about the kind and extent of medical or surgical treatment you want in the future.
For Eleanor, filling in an advance care directive was similar to signing an organ donor card. It also made things less frightening as family were then fully aware of her wishes for the future. The fact that her decisions can be reviewed on annual assessment, or earlier upon request, also allows flexibility should wishes or decisions need to be changed.
"Whilst I realise that end of life issues are difficult for many people, I can assure you, it will give you great peace of mind to know your wishes will be carried out, in the event that you can no longer speak for yourself. Remember, it's not just about saying what you don't want; it's about saying what you do want."
Eleanor Walsh
If you would like to read Eleanor's full article 'Peace of mind with end of life issues', please click here. Alternatively, if you would like a hardcopy posted to you, please contact the National Office.
