Dr Grumble on 9 September recommended a book – The Diving Bell and the Butterfly by Jean Dominique Bauby; I assumed from the title that it was a book about (or even by) a patient in an iron lung (assuming also a diagnosis of poliomyelitis).
However, it was a book by a patient who at the early age of 45 had had a severe stroke, involving the brain stem; he could not move, except from being able to turn his neck a bit, and to blink one eye – the other eyelid was sewn down to prevent corneal scarring.
He dictated the book using blinks to select letters from an alphabet board. It is a very moving book that I had expected to make me cry, but it did not. Instead it shamed me into realising how aware patients (whom we had thought to be brain dead) were of what was going on round them and how frustrated they became when their wishes were ignored, usually through ignorance or carelessness. The author is greatly to be praised.
Mea culpa.
I did not nurse many patients in this condition (in fact I can remember only 1, although I remember her vividly). I may excuse myself by saying I only met her a few times when I was working on the nurse bank. However, now I feel the guilt. I tried, but am sure I did not communicate properly with her. We did try to differentiate night from day (not always easy in a hospital ward) by turning the lights out at "bedtime", leaving only a dim one, and we did talk to her, and yet....
Thank you Dr Grumble.
This book should be compulsory reading for all junior doctors and student nurses and indeed anyone working with patients who have similar problems.
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4 comments:
I'm glad you found the book worth reading. I wonder how many others followed my recommendation.
I think this is a wounderful redemptive story, I have heard of the book but never read it. However as an ex ITU nurse, working latterly in neurological ITU, and hearing about these exceptional cases, I must confess to some concern. Not to take away the precious and marvelous episodes that we hear of, but to also bear in mind that not all patients have such capacities. Sometimes what is left is less than functional. I would not wish to take away anyones hope but neither would I give them false expectations. I hope people can realise that some of these cases are miraculous and not routine.
D
To anonymous, umm I don't think that I expressed that all patients, or even most patients could communicate as well as this gentleman; what I meant was that we should keep ourselves open to the possibility that the patient apparently in a coma may be more aware than you imagine.
My supervisor a few years ago told me a most horrific story about a patient she visited by mistake, who was supposed to be in a persistent vegetative state, until she noticed his eyes following her.
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