posted this article about palliative sedation and end of life decisions.
It's taken me a good bit of time to read and process, but I have some strong thoughts on what I would want in this situation.
First and foremost, if I'm severely injured or suffer severe brain damage or am in a coma or other condition that is going to end in my death soon, I do not want to be placed on a ventilator, a heart-lung machine, feeding tubes, or anything else that will keep me alive artificially. Yes, if I'm in an accident and I need temporary life support while the Doctors do surgery, etc that is fine, but I absolutely do not want to be kept alive by machines if my brain is gone. I know I need a written medical power of attorney given to someone who will abide by my decision and a DNR to ensure that, and that is on my list of things to complete in 2010.
But the main topic of the article is patients who are terminal, dying from cancer or disease, and suffering terrible pain, agitated because of the pain, and in many cases unable to communicate their wishes. I already suffer from chronic pain, and while my Doctors have prescribed narcotics to treat it, 98% of the time I do not take them. I don't like the stupid, the inability to concentrate, the lucidity failure that they cause when I take them. If I hurt enough to be asking to go to the hospital, asking for more pain medication it's because I'm well above a tolerable level of pain.
If I'm lucid enough to talk and not thrashing around in agitation or seriously struggling to breathe, I'd probably want something that dulls the pain but still leaves me conscious and able to communicate. But when I'm at the point where the pain is too great, my body is shutting down, I'm unable to communicate, then yes, I want them to do whatever they can to make me comfortable and let me die with at least a little dignity.
I won't give up easily, but when/if I reach the stage where death is inevitable, please make sure I'm somewhere that will treat me with respect and allow my last weeks/days/hours to be as painless as possible. I would also ask that you bring me an ipod or whatever filled with my favorite music - club stuff, goth stuff, industrial & ebm, portishead & delirium, synthpop & punk, jazz & blues, smashing pumpkins & early u2 & the screaming blue messiahs, fishbone & spearhead & swing - and turn it on on random/continuous play, with headphones at fairly low volume to play me out; that way I can dance in my head until I'm gone.
And Mom, Dad, I know this will be hard for you, but please, no church service, no priest or preacher at my funeral. Remember me, share stories, let my friends - the family I chose - share the me they knew, and everyone who can should have a drink in my honor (I'd be really happy if the wake were at my favorite bar, with a dj playing the music I loved quietly in the background). I'd rather things were simple - no viewing, just put me in a cardboard box, cremate me, and scatter my ashes in the Pacific and Atlantic Oceans. Once that is done, if you'd like to have a memorial at your church it's ok; I respect your faith, but it's not mine, and I would like for you to celebrate the life I lived without the trappings of something I don't believe.
Ok - that was hard. I have no intention of going anywhere anytime soon. But at some point I will die, and I'd rather be prepared, have my wishes known and public, just in case.