Important Documents and Cystic Fibrosis

Last updated: November 2022

When you live with cystic fibrosis (CF) you are familiar with having hard conversations. We must talk to our doctors about what happens if a new medicine doesn’t work. Additionally, we must talk to the children in our lives about living with CF. These are just two examples, but having hard conversations is a part of life when living with CF.

Living with CF means that there will be hard conversations. In addition to those hard conversations, we are used to having so much paperwork and documents. When are admitted to the hospital we fill out documents. As new medications are created and provided, we fill out documents. And whenever we see the doctor, we always fill out documents.

When hard conversations and filling out documents is a normal part of life, it can be easy to forget some documents. These documents are only used in specific situations. And they aren’t one’s people often talk about. The documents I’m talking about are the ones that let people know what we want if we can’t speak for ourselves. In this series, I’ll be writing about what these documents are, why they are important, and how to create them.

Important documents

Living with CF means living with documents. Every doctor you see, every medication you take – you can count on documents. And it can get overwhelming. Not knowing about, or forgetting, these documents is common. But it is important to learn about them so you and your family can be informed. The four documents I am talking about are:

  • Last Will and Testament
  • Durable Power of Attorney
  • Medical Power of Attorney
  • Funeral Planning Declaration

You may look at this list and think, “Whoa! I’m young! Why are we talking about funerals and attorneys?” Or you may be thinking, “I remember my doctor asking me about these! And then the subject changed I forgot what they said.” Either way, this is an important subject that needs to be talked about.

Why is it important?

Think about when you go to a new doctor or hospital. When you get ready to go, you make sure you have your I.D., your insurance cards, a list of medications, and a list of allergies. You want to be as prepared as possible. That same rule of thought can be applied to end-of-life care and decisions.

As CF deteriorates your lungs, there may come a point where you need someone to speak up for you. This may happen because you are unable to tell your team what you want. Another word for this is incapacitated. Being incapacitated means not having the physical, mental, or cognitive ability to manage their personal care, property, or finances.1 For example, being on life support can be a situation in which you are incapacitated. Less than 5% of people on life support can communicate with their physicians and care team, so making sure you have documents informing them of your desires is very important.2

Creating your documents

Once you have thought about and figured out what you want if you are unable to speak for yourself, it is time to create the documents. Each of these four documents we will be going over – Last Will and Testament; Durable Power of Attorney; Medical Power of Attorney; Funeral Planning Declaration – each has specific requirements. Some must be notarized, and some have to have witnesses with signature.

As we break down each document in this series, I will be sharing with you what I learned about creating them. There are also websites that provide further information. Additionally, some websites will provide either blank forms to be completed for your own document or they will have a template.

Having conversations about end-of-life care and death can be very uncomfortable. But as you will read, preparing these documents can provide peace for you and your family. Making sure that your wishes are known, respected, and carried out is so important. As you read the four following articles, remember that these documents are meant to help you and your loved ones during a sad and stressful time. Having things ready will help you and your family adjust as life changes.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Cystic-Fibrosis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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