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Cystic Fibrosis Trust

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.

Download the PDF

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 their clinician as preferred. It can be completed all at once or in stages, and a member of the CF team involved 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).

For emotional and psychological support around any of the issues raised on this page, please speak to your CF team or contact our helpline on 0300 373 1000 or by email.

Research we're funding

The Trust is committed to funding and supporting cutting-edge research to find new and better treatments for cystic fibrosis. Take a look at some of that work and the progress that is being made.

What is cystic fibrosis?

Find out more about cystic fibrosis, its diagnosis and how it is treated, as well as useful links to our publications and other organisations who can help.

More information

If you would like to find out more about any of our campaigns, publications or anything else, get in touch and we'll be happy to help.