Craving Inside Information – from the Outside

I mentioned last week that a dear friend has been diagnosed with a terminal disease. I’ve known this for several weeks now, yet it still catches in my throat many times a day. My work in patient empowerment and advocacy provides chafing reminders way too often that my friend is sick and that there is nothing – not.a.thing – I can do to help him.

Exacerbating my heartbreak is the fact that I am hundreds of miles away from where he lives, and I am a friend that doesn’t know his family. That means that getting information is very difficult to do.

He was hospitalized about 10 days ago. I do know that his family has rallied around him and I have been able to keep up… which is why I’m sharing this information with you.

His sister and daughter have been marvelous about posting almost daily to CaringBridge – a website that allows patients, families and friends to keep up with each other. I’m able to go there and read about his progress. I can add comments or send him messages. It’s an opportunity for an exchange of information that if it didn’t exist, would leave friends like me entirely in the dark.

Caring Bridge is just one website that makes it easy for this type of information exchange about and for patients. Care Pages is another one. I actually wrote some Do’s and Don’t’s for using patient websites about 1-1/2 years ago (everything from understanding that they aren’t HIPAA compliant to being sure to wash your hands afterward if you are the person posting about the patient from a public, hospital computer.)

But until this experience, I didn’t understand just how important this ability was. I now understand the frustration of being on the outside, craving inside information. “Important” isn’t even a strong enough word. Vital, maybe.

So why am I sharing all this with you?

If you are an advocate who works with hospitalized patients – you can use these websites to help your patients, their friends and family, and for your marketing too. Become familiar with them and how they work, plus those Do’s and Don’ts I mentioned above. When your patient is hospitalized, offer to set one up on your choice of sites. Encourage a family member to post (I’m sure it can be cathartic) – or offer to do the posting yourself and make sure that the people who read the site know that you are the patient’s advocate. Offer to answer (some – not all) questions for anyone on the outside who posts a question (obviously some questions should not be answered.) Be sure your patient and his/her family knows the site is not HIPAA compliant so they won’t be tempted to post anything that would make them uncomfortable either.

Think about all those people who will be so appreciative! Not even just family who are too far away (think adult grandchildren, for example), but friends who are nearby who should not (for many reasons) be visiting their friend in the hospital. Think of how many phone calls such a site replaces.

Bottom line – understanding how these sites work can make you a hero. It’s win-win-win, and peace-of-mind for everyone.

I know this now. Better than I’ve ever known it before.

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1 thought on “Craving Inside Information – from the Outside”

  1. Nellie Symm Gruender

    First, presence can be relative. I always suggest that friends and loved ones who can’t be “present” have a presence through spirit and love. Those whom we shared wonderful times with in the past keep those times in their hearts and minds and will feel our presence as they face difficult times.
    I also highly recommend Caring Bridge, and others like it, as a great “connection” tool. Beyond that it allows the person who is sick the opportunity to write thoughts during their journey. It also allows the family to share information without making 25 phone calls so they can use their precious energy to support their loved one.
    A reminder that these sites, while generally free, continue through donations. How better to to confirm your presence than with a donation.
    I will send healing thoughts to both you and your friend.

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