I have been annoying the shit out of everyone with this question since reading this New Yorker article on hospice and heroic medicine. It includes a case study of a man whose daughter asked him the question as they were trying to decide on the value of undergoing a heroic procedure. He said as long as he could eat chocolate ice cream and watch football on TV, it would be worth being alive, so he underwent the procedure, which made him a quadriplegic, but gave him 10 years more during which he did those two things, plus writing some books. When he began to have difficulty swallowing and other problems, he decided to go the hospice route.
I enjoy talking to a relative who's a hospice/end of life nurse, very skilled and experienced. She has just about had it with the pain people are often put through to stay "alive." The major problem with people facing death is the dishonesty--or difficulty in admission--of doctors, who insist on trying everything, and the dishonesty of loved ones, who insist on trying everything, no matter how brutal.
The sense I have is that if hospice consists of having the best possible quality of life in each moment until death, then we are all in hospice anyhow, aren't we?
My dream is to have the will of the individual respected, as much as I might disagree with their will. Of course this issue got turned into a cynical political ploy by those who don't want to stop making money off people's desperation and those who fear death and can't admit it, and so oppose universal health care.
Here are my three things--and all must be met, or the deal is off, and it's morphine and weed for me until the end, if I'm lucky.
1. I need to be able to create and communicate using complex concepts, at the least in the level I now enjoy.
2. I need to be able to pray (meditate, ritual, intend) for others through interaction with nature, even if that simply means feeling sunlight through a window.
3. I don't want to be so appalling--appearance, raging, violent, smelly, cut into pieces--that no one but a strong-stomached medical pro can stand to be in the same room with me.
That's mine. Yours?
Photo: Robert Wyatt, who creates and communicates using complex concepts, more so than I do.