Saturday, September 19, 2009

death panels.

the night my gram decided to die we were alone together. we were alone in the middle of the night in a smalltown midwestern hospital. there were a couple of nurses on shift who settled her into a room (she had been brought over from the nursing home where she was staying for several weeks while going through physical therapy to recover from a broken hip. there was water in her lungs-- a nascent case of pneumonia). everything was quiet and white and well lit. there was a sleepy young doctor at the nurses station looking over charts.

my arrival was hurried, and confused in that way that things are confusing when what woke you up was an emergency phone call. as i walked in the room my grampa walked out, grimacing, frantic. 'you talk to her. you talk to her,' he said, furious and defeated. i still had very little idea of what was happening.

let me skip ahead and tell you what i didn't know, and wouldn't really understand until well into that night's aftermath: gram had given up. and this strange moment, she saw, was her chance. what she needed to live was simple-- she needed fluids-- but it required hooking her up to a machine. once she was on the machine, it would be something quite complex to get herself taken off. but here, in the middle of the night, with only me, the young doctor, and her irascible but helpless husband, she could refuse. if she consented tonight to begin even the most basic treatment the inertia of hospital rules and a cadre of wellrested family members filled with goodmorning optimism would mean almost impossible odds. and she was done fighting odds she deemed impossible.

i don't know how to get back to that night, before i understood this, to fully remember and explain to you what happened or what it felt like then, before i'd fit fragmented experience into a story that made sense of it. but what i mostly remember, and what i want to talk about, is the stabbing helpless desperation of feeling that everything was at stake, and nothing was clear-- that it would be clear to someone, but that it wasn't clear to me, and i was the only one there. i was alone in the room with my small sad grama, who was pleading with me to understand and agree. she said she couldn't go back to the nursing home. she said 'i'm not strong. i never was.' she cried, 'i'm done. i'm just done.'

there was the vague sense that if i'd objected strongly enough that i could overrule her. but it wasn't clear. there was the vague sense that the prognosis wasn't so bad-- no one was telling us to give up-- which made her capitulation bewildering. but how did i get that impression exactly? when? was it about the pneumonia or the hip? was she just depressed? the nursing home was depressing. i felt depressed. should she be allowed to decide to die in that state of mind? how could i know her state of mind? were there really only two options? what was my role? did i get to decide? (she seemed to be pleading with me.) decide what? based on what? i was playing some role, the nature of which was unclear to me, in a situation i didn't understand, wrestling with feelings i never thought i'd have, suspicious of everything, particularly my own motives and knowledge. i felt like i was operate the heaviest machinery at gunpoint without a licence, and i just kept thinking, how can they let this happen? shouldn't someone in this giant white laboratory be explaining something to us?

how do i tell you, how do i really bring home to you that there, in the hospital in the middle of night it wasn't just the answers that were terribly unclear-- i couldn't even figure out what the questions were. and the young doctor and the unobtrusive nurses (those enormously competent nurses) weren't criminally neglectful, they were just giving us some quiet time to come to terms with some hard things. they didn't see i was drowning. i didn't know what to ask for help with exactly or how to. it was the middle of the night.

i don't think that my experience was unique. for all of the specific features of my circumstance detailed here, i think that what i was feeling was just what it feels like to confront the possible death of someone you love in the midst of the sort-of-science of modern western medicine happening in the tangled little bureaucracies we call hospitals.


one of greatest of a great many perversities of this healthcare reform debate has been the branding of end of life counseling for patients and their family members as "death panels". it's not even as if those shucking death panel fear are trying to make something bad seem worse than it really is. rather, they have attempted to paint one of the most sensible, insightful and deeply kind bits of legislation i've ever seen written up in official language as something monstrous.

i needed help-- not so much answering the questions as figuring out what they were and what all of the possible bases for making them might be. i've largely dedicated my life to being ready to understand and face mortal questions as they come up, but that night i needed help more than i've ever needed it since. if you think you wouldn't-- if you think, with senator grassley that we have "every right to fear [of end of life counseling]. you shouldn’t have counseling at the end of life. you ought to have counseling 20 years before you’re going to die. you ought to plan these things out" -- if you've never been through something like this before, and you think you could do better-- then i feel sorry for you, and scared for our country. there are a few things we all do have in common, and the experience of death is one. your time will come, and what i wish for you, and i couldn't wish more, is sound and thorough counsel.