Planning for end of life and cystic fibrosis
Getting difficult conversations out of the way, so you can focus on living life.
Making plans for the end of life can be very difficult, but it’s a good idea for everyone to start thinking about it early on, whether they have health problems or not.
Writing a will is a great start, particularly if you have children, and ensures that your wishes will be noted, lightening the load on loved ones. But there may be other things that are important to you that you can discuss in advance of your death; for example your thoughts on end-of-life care, organ donation, making memories for your family or funeral arrangements.
A guide to end of life planning for people with cystic fibrosis
Our new guide provides some practical information to help anyone, including those without CF, who wants to ensure their wishes at the end of their life and following their death are noted.
Advance care planning
Here, you can download an advance care planning form for people with CF and an advance care planning guidance document, designed to support clinicians and people with cystic fibrosis.
- Advance care planning for people with CF - this form is for use by a person with CF, to fill in either alone, with family or your clinician as preferred. It can be completed all at once or in stages, and a member of your CF team will be happy to discuss it at any point.
- Advance care planning guidance - these guidelines are designed to support clinicians to help people with CF as they fill in this form and have some of the conversations that this type of planning can involve. It may also be useful to anybody working with the advance care plan form (above).
End of life course for clinicians
Research we fund
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What is CF?
Cystic fibrosis, or CF, affects the lungs, digestive system and other organs. There are around 11,000 people living with it in the UK.
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