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.


mommymae said...

wow, laura. more people need to hear these stories. would you mind if i linked to you?

Drew said...

Well put. I would definitely be in favor of some counseling at a time like that. I dread the day when my parents and friends will be in those situations and I'll be there feeling bewildered, confused, and frustrated...and overwhelmingly sad. (Also, in regards to whether depression played a role in your grandma's decision, I can imagine depression playing a big role in my decisions around death. It'd be difficult for it not to play a role. I do wonder, however, if depression playing a role is necessarily undesirable. It seems to me that depression can stand as reason not to push on.)

All that to the side, I do think that some counseling about death at a time when you're not confronted with death would be beneficial. (I realize that this puts me on Grassley's side to some degree.) Would it be useful to work through some of the possibilities years in advance? Maybe. I realize that sounds morbid to alot of folks, but I think it's rather prudent. Part of what people struggle with during the time closest to death is that they've probably never thought about the things they're being forced to think about before. Alot of folks either don't think about death, or don't like to think about death. I definitely don't fall into the former category and I'm rather ambivalent about the latter. I suppose I don't mind thinking about death because it seems like the one area in life where I ought to be able to exercise control (and I realize that the political debate is about that precise issue).

mms said...

LG, thank you for you story and astute commentary. My family jsut went through the same scenario wtih my grandma just days before the term "death panels" was clogging the airwaves. It couldn't have come at a more appropriate time for my largely republican kin. Furthermore, in my professional life, I have just completed two papers which examine the likelihood of Sen. Grassley's proposition, namely the idea that people do seek counseling and planning long before they are faced with end of life care. The conclusion....they don't! And, thus, it is important to have available counseling not just for those who will be planning for death but for those of us who will there to advocate for their needs and desires. Thank you!

laura.g said...

hi jenny-- of course you can. and drew, i totally agree about the depression issue. that was one of the questions, one of the million amorphous difficult to differentiate questions making up the morass that was my state of mind at the time. i think it's a real question: even if i knew that was depressed, or to what degree, what should the significance of that in trying to answer all fo the other difficult to differentiate questions? i could live better with the fact that life is life and i might have had to give answers that i could never be sure of, if only someone had been able to help me get the questions right, so that i feel i could have really done my best.

also, in reference to the grassley comment-- i absolutely think that we should seek counseling around these issues earlier. i just think that it's inhumane to tell people on their death beds that it's just too bad and they should have made the time to think of things earlier. i mean, look, i'll go farther and agree with plato that philosophy is itself a way of preparing yourself to die well, and that we should all be doing it our whole lives. that moment was one among many that brought me to philosophy.

Lowry said...

Good work, LG.
I agree with mms that people don't really think about what they're going to want when they're in the vicinity of their death -- until they see someone close to them go through it. I'm not even sure people can think about this very well at all until they've been around someone dying.

This reminds me, of course, of the deaths of both my parents. Very educational. Doctors do the right thing by their lights, but this doesn't mean it's necessarily the thing that should be done. It's all exceedingly confusing. I am quite sure that doctors did one too many tests on my father and thereby hastened his death, but I am not sure at all that it would have been better if he had continued to survive, found himself in a rehab hospital -- from which he would probably never have been discharged except to die -- and then died. He was 102, for God's sake.

But they made him suffer unnecessarily. I certainly did not know how to intervene and break the momentum of their doing their professional thing. To know how to do that would require a very different sort of counseling. Or training. Or maybe a different personality from mine.

Hospice is a very good thing, and should be used more, should be available more.

The principal thing -- well, maybe I can't get away with saying that -- but one major thing in operation in our weird society's weird discourse about all this is denial of death, pure and simple. It's like one is not allowed to say "It's time for me to die," or -- especially -- "It's time for [my father, my mother, my grandmother, etc.] to die. The time has come. It's over." There is such a thing as a time when it's over. What's wrong with somebody in your grandmother's situation saying "I'm done"? In my opinion, nothing. By your account, she knew quite well what the situation was and how to deal with it, and she knew what she wanted.

Would she have wanted something different on a different night? No one will ever know. Therein might lie the rub.

Not too long after my father died, I wrote a bunch of advance directives in my health care proxy ("living will"). I had a strong feeling that I needed to do it while I was still remembering everything that happened with a vivid immediacy. I felt I'd be able to trust the judgments I made under those circumstances, and I still do. That was good "counseling," I suppose one could say, by experience.