With Emergency Preparedness Plans, Communication Is Key

Charlene Marshall avatar

by Charlene Marshall |

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While you can’t predict an emergency, it helps to be prepared for one.

Most young adults haven’t had to think about whom to notify during a medical emergency, but I have as a result of my idiopathic pulmonary fibrosis.

Two years ago, I published a column about the importance for PF patients of writing a respiratory protocol to help others understand various needs during an emergency. This was in the context of my workplace, and my aim was to help colleagues understand how to help me get what I needed or determine when to call an ambulance.

While it was beneficial and I’m glad it was implemented, it is only one step in my emergency preparedness plan. A separate plan is required at home.

Hospitalizations, serious illness, and end of life

This aspect of my emergency preparedness plan is where I always fall short. I never feel as though I’m completely happy with the chain of command I’ve put in place if something happens to me. Perhaps it’s because I don’t like thinking about it, but as a chronically ill patient, I have to.

I recently lost a friend to this cruel disease, and I am inspired by the control she had over her death and how it was communicated, because of the preparations she had put in place. Her family said it was the best gift she could have given them during such a difficult time, and I’ve learned so much about what to include in my own end-of-life or hospitalization plan.

I’m not knowledgeable enough about wills or navigating insurance, so I sought help from a professional. That part of my end-of-life plan is in place, but I continue to fall short on the communication side of things. Specifically, the plan about how others will be notified if something happens to me, who will communicate it, and how much detail will be shared remains fluid as I continue to learn from other patients.

Following are a few more things to consider:

Contact lists

If you’ve made a list of people you’d like notified when you’re hospitalized or seriously ill, can hospital workers or your caregiver easily find it?

It’s important to think about not only who is on your notification list, but also how it can be accessed if you can’t provide it. I’ve created an emergency contact list in the Medical ID section of my iPhone, which can be accessed without a password.

Social media updates

As much as I hate to admit it, there are benefits to social media pages. For example, Facebook is a quick and easy way to communicate something to friends and followers. It might be helpful to ask your caregiver or someone listed in your emergency preparedness plan to keep friends up to date via social media. Designate someone to be responsible for that.

It is also important to stipulate when you want that information communicated. I’ve had the unfortunate experience of finding out via social media that something had happened to a close friend, and it was painful. You can avoid this by establishing who is responsible for sharing personal information on social media and when it is appropriate to do so.

Level of detail disclosed

I also encourage people to offer direction about how much information is shared. While social media sites like Facebook might claim to protect your personal information, anything shared online can be found. Decide in advance what level of sensitive information you’d like shared during a medical emergency.

Password access

If you have passwords stored for important documents, contact lists, or bank accounts, take some time to write them down and let someone know where they are stored. This is an easy way for someone to gain access to the things you’ve deemed important enough to protect with a password.

What other things have you included in an emergency preparedness plan? Please share in the comments below. 


Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.


Holly W Patient avatar

Holly W Patient

Thank you for these important reminders, Charlene. You mentioned a couple of things I hadn't thought of, such as a contacts list and passwords. We recently worked on taking care of these matters, everything from wills/ trusts to advance directives and everything else. I felt a great sense of relief in having things in order, and I choose to believe that, by being prepared, nothing bad is going to happen! p.s. I can say from experience that trying to update a will from a hospital bed, while on multiple meds and incubated, is not an ideal scenario.

Charlene Marshall avatar

Charlene Marshall

Hi Holly,

Thanks so much for your kind words and reading my columns - it is always lovely to hear from you! I'm so glad you have spent some time looking at these's things, as tough as they are, I feel the same sense of relief. Thanks for sharing and I hope you're doing well!

Fay Mora avatar

Fay Mora

I was pleased to read about your preparations. I recently had a Hospital a
admission that gave me a scare with an exacerbation of my PF. First up I had my will updated and appointed power of attorney ( Australia). I’m working through my end of life directive
and appointed my son on FB to take over
my account. I agree, it is a comfort to know these things are in place and not to be afraid of dealing with them to take the load off the family.

Charlene Marshall avatar

Charlene Marshall

Hi Fay,

Thank you for reading my columns and reaching out via the comments. I'm sorry to hear of your recent hospital admission and exacerbation; those really can be so scary! I imagine your efforts in dealing with these things now, as difficult as they are, will bring a lot of comfort to your family. Kudos to you for tackling them and best wishes for your recovery!

Mary Ward avatar

Mary Ward

Thank you so much ☺️
You are amazing ??

Charlene Marshall avatar

Charlene Marshall

Thank you for your kind words Mary and for reading my columns. It's such a privilege to be able to write for the PF community :)
Take care,

Marilyn McNeil avatar

Marilyn McNeil

Thanks for this valuable tip. Maybe you could encourage IPF patients to do this, even those who are still in denial. It truly is a gift to families of patients.

Charlene Marshall avatar

Charlene Marshall

Hi Marilyn,

Thank you for reading my columns and reaching out via the comments. I agree with you, all IPF patients should do this (and arguably, everyone as we never really know what could happen to any of us) to help their families proactively. As you say, it really is a gift. Thanks for writing!


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