Just a quick follow up to yesterday's entry, we mentioned ward sister Mel and her insights into friends, family and patients. We think it would be interesting to open the floor to you guys. Imagine you were taken away from your life, placed into an Intensive Care Unit and you had no recollection of the past month. As you slowly …
Personally, if I entered a coma, one of the things that would be top of my list of things to remember is whether or not the NHS has managed combat the widespread problem of Health Care Acquired Infections within UK hospitals.
This would be a great concern to me as I would be very weak and frail in the ICU and catching a HAI would almost certainly complicate my already difficult situation.
Hang on! Wouldn't it be great if there was a way of reducing the spread of HAIs in hospitals using bluetooth technology? An idea like that could save the NHS millions of pounds! But most importantly I'd have a far greater chance of waking up in the first place, instead of dying, so I could get to use your fantastic system.
Just a thought.. ;)
What I'd want to hear
If i woke up after being in a coma or unconcious for a month, the first thing i'd want to know all about would be my condition and what happened to me.
After i had absorbed all that, then i'd just want to know what was happpening in the lives of people i know.
I'd like my friends to call after a few days to chat to them. maybe read up on my usual daily dose of theregister stories and see if any new tech advances were made....
but being in a hospital i doubt i'd get my fix of the internet in there
Ever hear of the newspaper test?
Newspaper test: Take a daily paper, put it aside for six months, re-read it. Ask yourself is there anything you really consider *important* to your life today that you did six months ago?
People get so caught up with the importance of now they rarely step back and look at the bigger picture. This also applies to the fallacy that "now" is important and one has be on top of "now".
I can personally relate to the subject of memory lost. Most of my childhood is missing. I can look at pictures of family members (i.e., mother, brother, sister) when I was a child and tell you who they are but have no memories of that time. The biggest thing someone with memory lost craves is a sense of continuity. If you think forgetting last night because of too much drinking is unsettling then image months or even years that are voids in one's memory.
Peter Gabriel's song "I don't remember." captures the feeling exactly. Most haunting is...
I don't remember, I don't recall
I got no memory of anything at all
I don't remember, I don't recall
I got no memory of anything
Anything at all
As for someone who lost their memory for a month they would want to know about their family and friends. They want to know about *their* life and not about what (insert latest "now" subject here). As such if I did not know them I would tell them nothing for in the grand scheme of things does it matter what Microsoft or Britney are doing? As for Bush we should be concern, shouldn't we?
What you want to know, when you are lying in ICU
A diary/journal/blog for your stay in ICU is a great idea in maintaining some kind of continuity and re-building identity.
It would be great to have some framework of when you were admitted and dates of medical milestones along your way, e.g. operations, progress, treatments or re-habilitation appointments. It would help to put some time frame onto the 'no-time' that inflicts the routine of recovery.
A list of people who visited you, their relationship with you, the distance they have come, what they thought of seeing you. Some friends/family visited me in hospital and I had no recall of them at all.
If a patient is up to making their own notes, that would be great as well, maybe record short low quality video or sound bites to encapsulate their mood and thoughts at points along the way. I spent a couple of months in hospital following a serious rock climbing accident and after coming out of a coma, suffered a bit of a relapse following an operation and have no clear memories of myself between coming out of a coma and suffering complications during an operation.
I was lucky that my mum stayed at my bedside thoughout my recovery and was able to provide me with some continuity through my recovery from ICU through to normal wards.
OK, not very structured, but I hope these notes are a useful cue for someone on the project team.
Picking up threads == motivation
A while ago a friend of mine had this experience. He found there were mix-ups between 'dreams' and reality during recovery. He said it was quite difficult to separate bizarre unreal 'experience' from actual events or reports of events.
My two thoughts on this are:
1. Having _written_ things to refer to would help to verify/validate reality. Being able to answer the "Did somebody tell me X, did X happen" questions sounds like a very good idea. Timeline is an obvious choice.
2. This chap was quite motivated to get back to work. Being motivated is a recognised success factor for speedy and full recovery. But what are those motivations is the first question outsiders have to ask. The internal ones such as "I want to finish the jumper for X's birthday" can't be deduced. But the everyday activities such as work, morris dancing, and so on are known to friends. What these friends could do is make it easy for the patient to pick up the threads, keep continuity and not feel nervous about rejoining society.
So my concrete suggestion is that organisations whose members or employees end up isolated in an unreal world, send a weekly postcard for the purpose of keeping the patient confident of still being part of the real world and motivated to rejoin it. Let's face it, anything is better than hospital but isolation breeds doubts and worries.
Let's try it...
If a friend or family member could post a blog, they could include: the stories that they found important from the news, their update on the patient's condition, and the video greetings of real and virtual visitors, maybe even a web cam (wouldn't you want your dearest to see you with a tube up your nose and your willy?). This would update others on the patient's progress and leave a comprehensive record for the patient upon their return to this reality.
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