adventures in disaster

hope?

I got a chance to spend some time with true baby docs this week and can I say I loved them?
To see this cheerful fourth year "I am in my last year!" med student waving her scalpel around like this was the coolest thing anyone has ever let her do cracked me up. The very idea that she thought her fourth year was "her last year" made me laugh even harder.
To spend time with a second year resident, confident but still happy about his choice made me feel like there was real hope with this new generation.
They both involved me so fully, picking my brain..Wide eyed thrilled that I had arranged all their supplies.."We don't have to do this ourselves?"..heh , even I was caught off guard.
With the docs I normally work with if I don't have everything set up exactly the way they want it they go all passive aggressive misogynistic rage. And no I never get thanks from them for doing everything but insert the damn chest tube for them.
So, it was fun and I felt like I was with colleagues, all of us working together to .....Well you just don't want to know what we were doing. Hell I still can't get the "oh holy mother of " out of my head and I do believe I threw up a little in my mouth, the fourth year was a trooper though,horror etched on her every fiber but she never faltered, gagged? Why yes..But falter? Never.

And that brings me back to my own personal nitpick.
There is a condition of the brain called locked in syndrome. It happens when you have a pretty significant brain injury..The mechanism of injury isn't that important..Stroke, car accident whatever..It's the results that matter.
Being locked in means you cannot move anything except maybe your eyes and eyelids, the muscles for swallowing maybe, some can breathe with a trach.
The horrible thing is your brain , your thinking, it all still works..... Think Lou Gehrigs without the years of preparation to plan for it.
What if no one knows you are still in there?
Or even worse they do know and to your complete horror they decide to keep you alive.
You are sentenced to a life of nothing , no laughter, no tears..watching mindless television you cannot even choose, listening to music someone else picked out. Laying fouled in your own waste waiting for someone to clean you. Seeing and understanding but never, ever speaking, interacting.
Trapped in some facility....Yes, this is what nurses have nightmares about..Someone thinking they are doing the right thing and someone else having to suffer for it.
I always wonder..Would those same people choose this living death for themselves?

So, they did some research and they" asked" people who were in fact locked in would you (to put this bluntly) rather be dead?
They answered no.
I get that. I think after enough time passes any life can seem better than being dead. Everyone adjusts, adapts to their new circumstance but I wonder if they had asked these same people in that first or second week of this new life would their answer have been the same?
I doubt it.
So, is it better to wait and hope for the patient to adjust, hell let's call it what it is, they settle for what they've got or is it better to accept that first moment when they realize they can eye blink the alphabet to tell you "please let me die"?
All I know is don't make me settle for a living death...I can't answer the question for anyone else.
An interesting side note ; the majority of those polled all had high to excellent one on one personal care with the physical ability to use and access computers for communication, moderate to high family involvement, middle to high incomes.
I wonder how those stuck in marginal, state run nursing homes without family, money or technology would have answered?


Just another reminder that not all medical care is a benefit and to fill out your living will, I can't advocate for you if I don't have a clue what you want.
Another thing is no one is required to accept any medical treatment. You have the right to refuse. You do not have to call an ambulance, you can say no to anything you don't want. It would be nice if people did that instead of complaining bitterly about a right to euthanasia..The "right to die"..Everyone has that right. Most people just don't exercise it.
If you don't want the trach or the vent or the feeding tube...Refuse it. Have your family refuse it...I am tired of having to bring this subject up over and over again...Know what you want and what you don't and tell everyone, put it in writing. Your passing is your responsibility as much as your life is in this shiny, high tech invasive world. It's not my job to know how you want to live or die.

posted by adventures in disaster @ 11:08 PM