Anon, the leading group for post-ICU followup is the Vanderbilt group, as I outline in the book. They have a nice website: http://www.icudelirium.org/recovery-center.html . It’s been my private hope that this book will actually be useful to survivors. I’ll be interested to hear what you think of it. If you feel comfortable, I’d be glad to hear your feedback (contact info is under Contact on http://samuelbrown.net ).
All best wishes.
]]>Thank you for addressing my comment (#3). I appreciate the caution regarding the PTSD trigger warning. Also, I appreciate the link to patient resources. I wish I had known how and where to get help following my trauma. Although I felt the follow-up cardiac support and care I received was excellent, I had to find my own therapist and navigate the landscape of emotional healing on my own. I wish I had understood what might happen following discharge and had been prepared with resources.
]]>I’m hopeful that the book and the related reform efforts will make ICUs less violent than they have been, while also helping clinicians to do a better job of providing personal and personalized care to people in the ICU.
On the general topic of ICU survivors, I recommend SCCM’s THRIVE initiative, which is doing wonderful work to support survivors and their families: http://www.myicucare.org/Pages/default.aspx .
You may also be interested in the WSJ piece today that talks about one relatively straightforward part of making ICUs better places: http://www.wsj.com/articles/icus-ease-restrictions-on-visitors-1470073304
All best wishes, Sam
]]>Honestly while I’ve known people who’ve died, I can’t say I’ve had anyone I was in a close relationship at that time die. Even when my grandparents died I was either too young to really understand but also wasn’t with them daily such as to have a close relationship. My parents and siblings are still alive. All my friends are alive. Acquaintance who have died have done so typically after a few years from when I stopped hanging out with them. Effectively I’m cut off from a certain experience of death. Even most people I do know who died, like my grandmother, died well into their 90’s when death seems like a mercy for a worn out body to end the pain.
Like most Americans, I’m cut off from people I’m deeply close to like my children being taken away too early. That affects so much of how I think about these things.
The points about end of life care are also well made. The difference between legal “right to non-intervention” and a kind of respect for end of life is well made. So much that’s well intended in end of life care is invasive and unhelpful. I remember just a few years ago while in the hospital with very, very bad pneumonia how it really changed how I thought about things. (The doctor came in one night and noted that my oxygen was up as high as it could go that if I didn’t improve by morning I’d be taken to ICU and might die. Talk about a shock out of complacency.)
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