Saturday, July 31, 2010

What Would You Need to Make It Worth Being Alive?

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.

6 comments:

David said...

Finished that looong article last night. Glad you jumped to the point--weed and morphine--instead of raging about the doctor-author's truth: "We've created a multitrillion dollar edifice for dispensing the medical equivalent of lottery tickets--and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win." It's a fucking industry based of phony hope--and hype from such as Pfizer, etc. Like your 3 things.... I guess I'd have to be a little more selfish and say I have to see, hear and be able to walk; otherwise, I'd look up to the hospice nurse, like that burned guy in the old movie, and move all the morphine needles on the bedside table towards her hand(slow build of Hans Zimmer/Gabriel Yared music).

Clara the Plott hound just appeared at the door after a morning of hunting and playing in the woods; the mountains are cool and cool; if I couldn't walk in them I'd opt for the bedside table trick.

David

Slothrop said...

Maria - thanks for raising the question. It's one of those things I probably never would've had the guts to contemplate w/out being prompted. I particularly like your answers.

I would have two requirements: An intact memory (which would probably mean an intact mind, doubtful under the circumstances) & some means of communicating these memories to others. I've been really fortunate in having some deeply rewarding experiences and in knowing some incredible people. If I were able to pass a pale shadow of these times & friends on to others, my life would be worth it. (Hopefully to a non-bored audience...)

I do feel guilty making such armchair pronouncements. I've never believed in the intrinsic sanctity of life, so I can never know how much I would cling to my own w/out being there. When I worked as a volunteer in India I cared for a very, very young woman who had suffered a "kitchen accident." All of her body except for her head was charred beyond recognition. Apparently the attack had affected her mind, because she wouldn't talk to anyone. She was only happy when sitting in the sunlight of an upstairs window, high on painkillers, w/ her eyes closed & gently squeezing Jumbo Life Savers in her fingers.

I grew to love her, but she put me in mind of the line from "Hamburger Lady": "...In point of fact this lady has not slept more than 3-5 minutes at a stretch...&, thanks to medical advances, there is no end in sight..." An enormous amount of time, energy & technology was being marshaled to keep this girl in exactly the state she was in. The Missionaries of Charity believed that all life had to be preserved at all costs, & if we agnostics wanted to work there we had to accept that. You focused on the few happy cases – people getting better, happier - & tried to tune out the wall-to-wall agony. Very limited access to painkillers, because painkillers are basically hard drugs & the home was in the middle of a criminal slum; knowing little of the dialect, you wondered how voluntary the patients' stays there were, & if they would lead shorter but higher quality lives on the street w/ their friends & familiar routines. I was constantly trying to put myself in their shoes & wondering if clinging to life would be worth it. But I didn't have anything nearly as powerful as their religion on my side. Maybe that makes all the difference.

Slothrop said...

Maria - thanks for raising the question. It's one of those things I probably never would've had the guts to contemplate w/out being prompted. I particularly like your answers.

I would have two requirements: An intact memory (which would probably mean an intact mind, doubtful under the circumstances) & some means of communicating these memories to others. I've been really fortunate in having some deeply rewarding experiences and in knowing some incredible people. If I were able to pass a pale shadow of these times & friends on to others, my life would be worth it. (Hopefully to a non-bored audience...)

I do feel guilty making such armchair pronouncements. I've never believed in the intrinsic sanctity of life, so I can never know how much I would cling to my own w/out being there. When I worked as a volunteer in India I cared for a very, very young woman who had suffered a "kitchen accident." All of her body except for her head was charred beyond recognition. Apparently the attack had affected her mind, because she wouldn't talk to anyone. She was only happy when sitting in the sunlight of an upstairs window, high on painkillers, w/ her eyes closed & gently squeezing Jumbo Life Savers in her fingers.

I grew to love her, but she put me in mind of the line from "Hamburger Lady": "...In point of fact this lady has not slept more than 3-5 minutes at a stretch...&, thanks to medical advances, there is no end in sight..." An enormous amount of time, energy & technology was being marshaled to keep this girl in exactly the state she was in. The Missionaries of Charity believed that all life had to be preserved at all costs, & if we agnostics wanted to work there we had to accept that. You focused on the few happy cases – people getting better, happier - & tried to tune out the wall-to-wall agony. Very limited access to painkillers, because painkillers are basically hard drugs & the home was in the middle of a criminal slum; knowing little of the dialect, you wondered how voluntary the patients' stays there were, & if they would lead shorter but higher quality lives on the street w/ their friends & familiar routines. I was constantly trying to put myself in their shoes & wondering if clinging to life would be worth it. But I didn't have anything nearly as powerful as their religion on my side. Maybe that makes all the difference.

Slothrop said...

Maria - thanks for raising the question. It's one of those things I probably never would've had the guts to contemplate w/out being prompted. I particularly like your answers.

I would have two requirements: An intact memory (which would probably mean an intact mind, doubtful under the circumstances) & some means of communicating these memories to others. I've been really fortunate in having some deeply rewarding experiences and in knowing some incredible people. If I were able to pass a pale shadow of these times & friends on to others, my life would be worth it. (Hopefully to a non-bored audience...)

I do feel guilty making such armchair pronouncements. I've never believed in the intrinsic sanctity of life, so I can never know how much I would cling to my own w/out being there. When I worked as a volunteer in India I cared for a very, very young woman who had suffered a "kitchen accident." All of her body except for her head was charred beyond recognition. Apparently the attack had affected her mind, because she wouldn't talk to anyone. She was only happy when sitting in the sunlight of an upstairs window, high on painkillers, w/ her eyes closed & gently squeezing Jumbo Life Savers in her fingers.

I grew to love her, but she put me in mind of the line from "Hamburger Lady": "...In point of fact this lady has not slept more than 3-5 minutes at a stretch...&, thanks to medical advances, there is no end in sight..." An enormous amount of time, energy & technology was being marshaled to keep this girl in exactly the state she was in. The Missionaries of Charity believed that all life had to be preserved at all costs, & if we agnostics wanted to work there we had to accept that. You focused on the few happy cases – people getting better, happier - & tried to tune out the wall-to-wall agony. Very limited access to painkillers, because painkillers are basically hard drugs & the home was in the middle of a criminal slum; knowing little of the dialect, you wondered how voluntary the patients' stays there were, & if they would lead shorter but higher quality lives on the street w/ their friends & familiar routines. I was constantly trying to put myself in their shoes & wondering if clinging to life would be worth it. But I didn't have anything nearly as powerful as their religion on my side. Maybe that makes all the difference.

Slothrop said...

I'm sorry for the repetition!! My machine (again) is reacting badly to the page. If I could delete two of them I would.

Maria Padhila said...

@david--i loved that quote too. what a racket. @slothrop: this is your free pass to post as often as you want. go man go. (i'm wondering if what she saw and felt on her painkiller highs made it worthwhile.) not everyone has all the choices we have here, but as long as we have them...it would be nice to make them for ourselves.