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Allow Natural Death
December 3, 2012 4:36 AM   Subscribe

"With multiple organ failure it’s hard to get everything balanced just right so that oxygen is getting to the brain and the person can “wake up.” So, if nothing else, I know how to misallocate an important moment. Here I was, with my mother dying in front of me, and I still wanted her to be proud. Just, proud."
posted by Pope Guilty (44 comments total) 33 users marked this as a favorite

 
Super hexagon is just too hard to be enjoyable.
posted by davemee at 5:17 AM on December 3, 2012 [2 favorites]


Well written...

I wish peace to everyone that has, in their own way, this story to tell.
posted by HuronBob at 5:18 AM on December 3, 2012 [9 favorites]


I've listened to this woman speak to me more in the past few months than a lot of people I'm embarrassed to mention.
posted by neustile at 5:48 AM on December 3, 2012


oh dear lord, what a way to start a Monday... *sniff*
posted by Theta States at 5:57 AM on December 3, 2012


I sat in the darkened ICU and thought a lot about videogames.

I find this deeply disturbing on many levels.

This isn't a game. It isn't. Don't you know that?
posted by twoleftfeet at 6:02 AM on December 3, 2012 [1 favorite]


Oh, my God, it’s so self-centered

When I'm dying, the last thing I'll want will be someone shoving the voiceover for an iPhone game in my face.
posted by raygirvan at 6:06 AM on December 3, 2012


I am so glad we are moving the language, slowly, painfully to Allow Natural Death in place of DNR.

I attended a hospital event last Thursday evening with a bunch of scared and angry patients. They have been following the appallingly tabloid press reporting here in the UK of the Liverpool Care Pathway and they were right to be scared.

some doctors still have to work on the communications with family and patients but it was an eye-opener. I was blown away by the passion of the lead for ICU and his clear desire to improve the experience of patients and their families.

After his presentation of how they are trying really hard to improve their communications the first response from the audience was "I'm not sure I'm comfortable with someone being so passionate about death!"

It's all in the delivery, I thought to myself. And the audience.
posted by Wilder at 6:07 AM on December 3, 2012 [2 favorites]


twoleftfeet: "I sat in the darkened ICU and thought a lot about videogames.

I find this deeply disturbing on many levels.

This isn't a game. It isn't. Don't you know that?
"

She's a freelancer who's written about gaming and talked about how it influences life for going on two decades now. Seems reasonable to me.
posted by ShawnStruck at 6:10 AM on December 3, 2012 [12 favorites]


It is all in the delivery. That is why we have Palliative Care teams who are consulted to come to the bedside and spend whatever time necessary so that every family member can work through their misgivings and guilt over allowing natural death and the cessation of numerous floggings masquerading as medical care. It is the next logical step in stopping the unhinged wastefulness of the last 4-12 months of life that makes misery of what could be dignity and comfort, a lot of it driven by guilt, anxiety, and completely unrealistic expectations.
posted by docpops at 6:14 AM on December 3, 2012 [5 favorites]


raygirvan: I'm assuming you don't have kids. Because when I'm dying one of the things I would most like to have presented to me is evidence that my daughter is living her life and doing things she finds important.
posted by 256 at 6:15 AM on December 3, 2012 [36 favorites]


I find this deeply disturbing on many levels. This isn't a game. It isn't. Don't you know that?

Death is The Great Unknowable, and the death of a loved one is scary as shit as a result. Each of us seeks their own way of relating to it, comprehending it, figuring it out.

For this person, videogames is how they "get it". For Damian Hirst, sticking a shark in a tank of formaldehyde is how he "gets it". We each find our own way of "getting it", and if anyone's way gives them comfort, I ain't gonna question it.
posted by EmpressCallipygos at 6:17 AM on December 3, 2012 [8 favorites]


I don't know. There's something about the gaming world and death - the idea of death - that I don't understand. In these games, you can die, and then you come back a few seconds later and start over. It's not the way I learned about death when I grew up.

My four-year-old says stuff like this. "Daddy, today I died three times!" And it always freaks me out, even though I know he was just playing a game.

To me, growing up, in the old days... once you died you stayed dead. And I'm pretty sure it still works that way for actual death (not "game death"). But maybe our point of reference is changing how we feel about that.

What are people supposed to do when they die? What should they say? Should it be Shakespeare?
Here, here will I remain
With worms that are thy chamber-maids; O, here
Will I set up my everlasting rest,
And shake the yoke of inauspicious stars
From this world-wearied flesh.


That seems a bit pretentious. And no longer relevant to modern experience.

What do we say?
"I am dying, Egypt, dying:
Give me some wine, and let me speak a little. . .
Perhaps you could cycle my power anew
By unplugging, and then replugging
My power cable
Which connects me to life, and to beauty, and to game.
Wait 20 seconds before you replug."

posted by twoleftfeet at 6:28 AM on December 3, 2012 [6 favorites]


I sat in the darkened ICU and thought a lot about videogames.

I find this deeply disturbing on many levels.
When my wife was in the ICU in a coma I plowed my way through one Marvel Essential omnibus a day, and blogged about it. You just don't know what you think about or how you cope until it happens to you.
posted by MartinWisse at 6:31 AM on December 3, 2012 [32 favorites]


There's something about the gaming world and death - the idea of death - that I don't understand. In these games, you can die, and then you come back a few seconds later and start over. It's not the way I learned about death when I grew up. My four-year-old says stuff like this. "Daddy, today I died three times!" And it always freaks me out, even though I know he was just playing a game.

You and your friends never acted out gruesome death scenes when you were playing cops and robbers (or whatever), only to jump right back up when the game was over?
posted by EmpressCallipygos at 6:32 AM on December 3, 2012 [7 favorites]


It just seems different. We would play cops and robbers (or whatever) but the death scene meant something back then.

We didn't go into the game knowing we had twenty lives (or whatever).
posted by twoleftfeet at 6:41 AM on December 3, 2012 [1 favorite]


Having been through the whole beloved-family-member-in-palliative-care thing I thought this was a really nice essay. I'm so glad that, by the time my generation grows into old age, our society will most likely have completely dropped the pretense of "longer life is better life no matter what" and focus on orchestrating the most comfortable final moments possible. Thank you for posting.
posted by Mooseli at 7:21 AM on December 3, 2012 [2 favorites]


twoleftfeet, death in video games often has repercussions. Sometimes it's just time, and depending on your view of time.. that might not seem like much. The point of death in video games is not to mimic death in real life and I would agree is a poor teaching or preparation tool for it.

Death in video games is the game's way of telling you that you're doing something wrong. You're not strong enough, skilled enough, don't have the right items, or not executing the proper strategy. The game could easily flash up a screen that says: "You didn't succeed. Try again." instead of "You died. Try again." You get to try again because it would be a waste of time (and/or money) if the gaming experience was completely over when the character dies. Remember that video games set you up to fail. You are set up to die.

Video Games use death only because that's how we process the game over of life as humans. No one tells us when we die that "you didn't succeed at life" because that's not how most people look at death. As a matter of fact, oftentimes people see the exact opposite. If someone said "he lived a long and full life" I'd say he succeeded at life. You can't avoid death by getting stronger, more skilled, buying more stuff, or living your life right. Doing all those things can only delay death in the real world.

Video games borrow concepts from the real world, but are in no way perfect reflections of it. They borrow these things to make it relatable to the people playing it, that's all.

I will also say that I don't think anything can teach or prepare you for death. It's one of those concepts that you can understand the theory of, but until you experience it.. you can't know it.
posted by royalsong at 7:31 AM on December 3, 2012 [4 favorites]


The last time my father was in the hospital, he told me he was proud of me. That's what he needed before he died. Sure, it was great for me to hear, and it's a treasured memory that I do not take for granted, but it meant more to him. I was there to talk about death, to talk about his fears and regrets, but that's not what he wanted. He wanted to know I, and the rest of the family, would be OK without him, that my job was solid and I had a nice girlfriend and loved my mother and didn't need him anymore.

He didn't die that time. He got better and lived another 6 months. I saw him one more time, and we sat and watched movies and went to the dump (or something--I don't even remember) and that was just fine.
posted by MrMoonPie at 7:34 AM on December 3, 2012 [6 favorites]


He wanted to know I, and the rest of the family, would be OK without him, that my job was solid and I had a nice girlfriend and loved my mother and didn't need him anymore.
That was really well-stated, thank-you.
posted by docpops at 7:37 AM on December 3, 2012



This isn't a game. It isn't. Don't you know that?
And squeezed it again. And then I cried, and she squeezed my hand another time, and I looked up and right into her eyes, which were wet and meaningful and so clear, and her face was obscured by the breathing mask but her eyebrows were furrowed the way they always are when I cry, and I apologized to her for hurting her and for being so sad, and I looked down again at our clasped hands, and then I folded myself in half and cried into both our hands.

And then I pitched forward off the chair and onto my knees and I cried into her bedsheets and kissed her hand, because there was that mask forcing air into her and there was too little of her face to kiss.
Yeah, the author clearly doesn't know that grief and letting go isn't a game. She was probably thinking of the sick high scores she was getting by executing the poleaxed-by-unbearable-helpless-emotional-agony combo and was probably actually whooping inside. You've shared important and well-thought-out insights; thank you.
posted by Drastic at 7:54 AM on December 3, 2012 [26 favorites]


A much longer piece about the hell of end-of-life care and a larger view of the systems around it was "Letting Go" by Atul Gawande, which is still fresh in my mind after reading it included in this collection. (It was a bad article to read parts of in an airport, for the usual dust-in-eyes reasons.) Also well worth reading.
posted by Drastic at 7:59 AM on December 3, 2012 [2 favorites]


Dusty room warning.
posted by olya at 8:16 AM on December 3, 2012


It's like, Game Over, but like, totally for reals. Yeah, I wouldn't be trying to show my mom a video a game on her death bed but that's, like, just me.
posted by ReeMonster at 9:08 AM on December 3, 2012


@256: raygirvan: I'm assuming you don't have kids. Because when I'm dying one of the things I would most like to have presented to me is evidence that my daughter is living her life and doing things she finds important.

No, but I was around when my mother-in-law was dying a year ago. She'd lost any capacity for anything as complex as pride, or understanding why anyone should feel pride in a sound squawking out of some gadget. The only thing that counted was human contact. Sharing memories and experiences is great during stable times during final illness, when the dying person is compos mentis. This just seemed obtrusively late, and crass.
posted by raygirvan at 9:19 AM on December 3, 2012


Those of you saying "well, I certainly wouldn't/didn't do something like that" - how about we all agree that death, dying, and grieving is a highly individual and personal thing unique to each and every one of us, and thus it is therefore possible that what makes total sense to you would be all wrong for another person, and vice versa?
posted by EmpressCallipygos at 9:23 AM on December 3, 2012 [19 favorites]


How can people read that article and react negatively towards the writer? Did you read all the words she wrote? I mean all of them? My heart just broke for her.
posted by ThatCanadianGirl at 9:52 AM on December 3, 2012 [10 favorites]


That was a touching and sincere read, and I don't really get the criticisms some folks have posted here. I lost my Mom suddenly a few years ago and I spent the day after her death lying on the couch watching shitty movies. It felt weird at the time, like I should come up with some more acceptable or cinematic way to mark her passing, because certainly she deserved more in theory than a viewing of The Butterfly Effect. It was, however, all I could manage.

We all deal with death and grief in different ways. I liked this article a lot.
posted by jess at 10:05 AM on December 3, 2012 [2 favorites]


This just seemed obtrusively late, and crass.

Guys. This is what helplessness feels like. Nobody is good at watching someone they love pass away. In the face of fear and sadness and anger and denial, when your brain is spending most of its processing power yelling and then crying and then yelling again "No! Noooooo! No!" for days or weeks on end, you don't always do the best things. You don't do the things you'd imagined you would do. You don't do the things you will wish you had done, when you spend the ensuing years reliving those final hours with your mom or your dad or your spouse. You feel like a drowning person, flailing about for something to hold onto, but there's nothing to hold. You try all the coping methods that have worked in the past: tell a funny joke, give them something to be proud of, distract yourself, even lie and say it's all going to be ok, but it all seems crass, and none of it stops the dying.

But that's ok. It's horrible and terrifying and you do everything wrong, and still somehow there is beauty in your very failure. You are being forced to face up to something huge, and your inability to handle it is part of what makes you human, part of the price you pay for loving deeply. There is a profound honesty in this fumbling, an admission that the loss of this person is leaving you directionless.

I found it to be a beautiful, heart-wrenching piece. Very well written.
posted by vytae at 10:05 AM on December 3, 2012 [21 favorites]


> She was probably thinking of the sick high scores she was getting by executing the poleaxed-by-unbearable-helpless-emotional-agony combo

Says who 140 characters is not enough?
posted by de at 10:08 AM on December 3, 2012


I am so glad we are moving the language, slowly, painfully to Allow Natural Death in place of DNR.

I've thought about this, and I understand the emotional impulse behind changing the words, but AND is so much less clear than DNR. The latter is an order to the care-givers who ordinarily might want to swoop in and resuscitate someone who is on their way out. It says, don't do that for this person. AND is fuzzy and ambiguous. What's natural? Is starvation natural? Is fibrillation? Is a treatable infection? Making the change might do more harm than good ultimately. I'd like to see more consideration before making the change.
posted by Mental Wimp at 10:15 AM on December 3, 2012


Could we maybe just this once not start up the Metafilter Hate Machine, given that the author's mother just died?
posted by IjonTichy at 11:21 AM on December 3, 2012 [1 favorite]


Oh boy. That was incredibly difficult to read, having been by my grandmother's side throughout her last weeks in August. Many times I thought how unfair it was that she was being kept alive by the 'wonders' of modern medicine. It was such an undignified process for her poor worn-out body to try to die but wasn't being allowed to.

Thankfully she had a wonderful doctor who quietly offered to stop all her medication, and just give her morphine and a morphine substitute to ease her pain.

I'd never heard of AND before today but with the benefit of hindsight, my grandmother's doctor certainly applied it. He eased her suffering by allowing the process to be shorter and less painful for her, and eased our suffering of having to watch her die slowly and painfully.
posted by malibustacey9999 at 1:51 PM on December 3, 2012 [1 favorite]


Argh. I did not want to start Tuesday morning tearing up on the train.

What a great, powerful read.
posted by Xany at 2:18 PM on December 3, 2012


My pastor's mother died about a year and a half ago, not long enough after discovering aggressive, invasive breast cancer. On Facebook, about three weeks after her mother's death, she wrote about how she held her mother's hand and said "It's OK, Mom. It's OK. You can go."

She said, "Why did I lie? It wasn't OK. It wasn't OK at all. Why did I tell her she could go? I need her here, she's my mother, she's my son's grandmother. It's not OK. And then I realized. . . those times when I sat by her bed as she gasped with pain, trying not to howl, I prayed fervently for God to give me her pain, to take it from her and give it to me. And as I sit here now, my heart a dull wreck within my chest and my eyes dried out from sobbing, I know. . . God answered my prayer. God took her from her pain, and now the pain is mine."
posted by KathrynT at 2:43 PM on December 3, 2012 [13 favorites]


What's natural? Is starvation natural? Is fibrillation? Is a treatable infection? Making the change might do more harm than good ultimately. I'd like to see more consideration before making the change.

yeah. i will add that if someone is essentially an unrecoverable vegetable or suicidal, i can understand that, but if you're talking about allowing people to die you have to be careful that it doesn't start becoming about expedience or disgust.
posted by This, of course, alludes to you at 2:50 PM on December 3, 2012


An amazing essay. Beautiful writing about a very difficult subject.

I've never lost a parent, but I was there for the death of both of my (very, very) longterm girlfriend's parents. The ICU can be a terribly dramatic place, but it can also be tedious. Day after day, night after night, with nothing to do but sit beside a sleeping loved one as the machines go ping. You think about the past, and the future. You read a lot. You worry about what's happening at work while you're gone. Your mind wanders to silly stuff, and you feel guilty about thinking about silly stuff, because a loved one is slowly dying three feet away. And you tell yourself that the human brain is a busy place, and it's natural for the mind to wander, especially when something so horrible is happening and it just keeps happening.

She writes about video games, and she thought about video games while her mom was dying. And in a last, fumbling attempt to make her mom proud, she tried to show her mom a game she'd worked on. I'm kind of amazed that people feel like they have the right to criticize her for her very human reaction to one of the worst things anybody can go through. She dealt with the death of a parent as best she could, which is all any of us can do.
posted by Ursula Hitler at 7:02 PM on December 3, 2012 [5 favorites]


Vytae said the same thing, but earlier, and better.
posted by Ursula Hitler at 7:04 PM on December 3, 2012


I thought this was a beautiful piece. This woman clearly loved her mother and clearly deeply mourns her death. I think any criticism of her behavior at her mother's deathbed is weird and mean.


And I say this as someone who's lost her grandfather, aunt, father, and stepfather in the past three years. It's been rough and I don't judge her attempts to reach her mother in her last moments. Shit the last thing I said to my stepfather was a dirty joke. It made him wheezily laugh. He died later that day. Maybe I should have said something more profound but I feel ok with having made him laugh.
posted by Aquifer at 9:50 PM on December 3, 2012 [5 favorites]


i will add that if someone is essentially an unrecoverable vegetable or suicidal, i can understand that, but if you're talking about allowing people to die you have to be careful that it doesn't start becoming about expedience or disgust.

posted by This, of course, alludes to you


I see your point, and I don't want to come across too harshly, but have you sat by the bed of someone you love dearly, who is 90 and comatose, and the only time they move or make a sound is when they are injected - in their belly - with a painkiller because their skin won't support the automatic-injection thingy? And they scream and cry in pain because they're being jabbed with a needle the size of a horse every two hours? Have you ever seen that comatose person - who taught you to play scrabble, and played hide'n'seek with your kids, and whispered in your ear at her 90th birthday party that you were always her favourite of her eleven grandchildren - scream in fear as she is gently turned over to be washed so she doesn't get bedsores, because on some base level she is frightened of falling out of bed?

People were praying for a miracle. I didn't want a miracle. I just wanted my poor old Nanna to be free from pain and a body which was worn out.

You can call it expedience, I guess. But I call it mercy.
posted by malibustacey9999 at 12:35 AM on December 4, 2012 [1 favorite]


We had a sort of "Great Family Die Off." in the '80's. All of my Grandparents, a great aunt, 2 uncles, & my step-dad in the space of a few years. I was at the time loading up with every chemical I could find, as a way I suppose of dealing. I am such a strong man.
My Mom is now in her mid 70's and I've been sober, far longer than I ever did drugs or drink. I would like to believe that I can offer appropriate care when the time comes, but, I've always been a selfish asshole, and I can't imagine that changing just because someone important to me needs to see my better nature.
posted by evilDoug at 12:25 PM on December 4, 2012 [1 favorite]


I think I grabbed those things—the game, the magazine—as I was leaving Chicago for Texas because I thought she'd get better? She lived a bunch of times she wasn't expected to. Anyway, I was supposed to bring both in just a few weeks. Well, it isn't very good writing, I guess, or else it's just a too-short conclusion to a years-long series of articles, as Shawn pointed out.

My adoptive dad died in June 2011 of complications from Alzheimer's (I'm 30 now), and I do think certain "games"—simulations, systems—have gone tremendous lengths in helping me make sense of how our own systems might thrive or fail. No, life is no video game—although James P. Carse's Finite and Infinite Games goes a great distance in explaining how they could be. But other people might find other design vocabularies or philosophies more useful in framing the mess of life. That's fine. Still, all those systems, those analogies, probably fail eventually, like all things. There are only so many things you can anticipate before you can't anymore, you know? I don't know.
posted by jennanemone at 8:08 PM on December 6, 2012 [6 favorites]


I'm coming late to this, but wanted to pipe in to say I think Jenn Frank is a great writer, and that especially for those of us who grew up with video games these sorts of articles are terribly, terribly moving, the game here functioning mainly as a sort of cultural touchstone through which the rest of the piece gets to resonate more than it otherwise might. While all personal non-fiction writing works this way to a certain extent, maybe games -- again, at least for those of us who were steeped in the things as children -- work especially well: the kind of nostalgia they kick up, and the way you can be sort of hypnotized by the ultra-focus some of them require, letting them act as particularly effective Trojan horses for this sort of article's resonant payload. (Though I might be pushing the point a step too far: if a love of novels happened to be at the center here that might work equally well?)

So some of the earlier comments I find not just inappropriate but maybe also more than a touch hurtful. Here's this terribly moving piece about the writer's mother passing away as she watches and the mere mention of a game is enough for people to say she's somehow done something wrong? Maybe death just needs to be added to the list of things people tend to get huffily self-righteous about (parenting and money being two other big ones), justifying their personal decisions by inappropriately claiming them as universally and exclusively proper.

In any case, others have made these points more elegantly above, but I guess I wanted to add one more voice to that stack.
posted by nobody at 7:36 AM on December 7, 2012 [2 favorites]


Just to clarify - Jennanemone, did you write the linked article? If so, I'm very sorry for your loss, and I really appreciated your willingness to share your experience.
posted by vytae at 2:54 PM on December 8, 2012


Just to clarify - Jennanemone, did you write the linked article? If so, I'm very sorry for your loss, and I really appreciated your willingness to share your experience.
To clarify, I did. Thank you for your many kindnesses. I wish I could explain myself well, and I'm so privileged that you did such a good job here.
posted by jennanemone at 5:40 PM on December 8, 2012 [3 favorites]


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