the pelican

Thursday, March 24, 2005

free will

perhaps one of the hardest things to do was to “pull the plug” on my mother-in-law a few years ago.

well, maybe it wasn't so hard.

it some ways it was quite easy.

it was easy because there just wasn't much doubt that it was the right thing to do. it felt right and none of us have doubted it since. she was gone and we had to let her go. we wanted her to be free of suffering, to be at peace.

but it was hard because we wanted to be sure she had every chance. and also because, selfishly, when you get right down to it, we didn't really want to let her go. didn't want to decide when the end was. and we didn't want to be responsible for that decision. that horrible decision.

it felt violent to make the decision, as though it wasn't ours to make.

it was very scary. it was impossible.

but then once all the panic washed over and the fatigue hit and finally acceptance started to come in, it just became very clear.

at the time, my husband and his father were in so much shock and couldn't let go because they felt they were giving up on her, or letting her down in some way. the doctors had said we would need to think about what we wanted to do about the situation pretty soon. it was me who finally made the decision in some sense, and maybe they let me because it relieved them of the burden, the guilt, the fear, the uncertainty, the responsibility. i said, look, she's gone. we need to let her go. and they were so relieved once it was honestly stated. the idea started to settle in with them. they had to be reassured that they weren't somehow killing her, but allowing her to continue on her journey, her transformation, her exit stage left.

and in the scientific world it seems that death is considered a failure. something that should be avoided and put off and maybe even miraculously be cured of.

funny failure that. seeing as how death is sort of a central part of life. the end result of it and all. inevitable. for death will come to us all. we are born to die.

and she'd done her fair share of struggling. fought the good fight. didn't give up. and her body took her as far as it could.

so we made the decision. the doctors hinted at it. gave us the options. we watched the entire team of nurses maintain her and her machines around the clock for so many days. i suggested it and they came round to it. it took lots of discussion, and thought, and a several long semi-sleepless nights in hospital waiting room chairs and daily trips to and from denver. but what it came down to, was that we all realized that it was our desire to hang on to her, and that our fear of letting her go and not her own will to live kept the machines going. once we realized that, it became very clear.

the doctors couldn't really look us in the face when we told them our ultimate decision. before, when they were telling us how we'd have to make a decision soon, they gazed into our faces with a pleading, apologetic look. but when we told them, they just looked at the floor. as though they had failed. they nodded and stared at the floor and told us our decision was appropriate, rational, reasonable and realistic. they said they were sorry. and they explained the process of how they would turn off each machine, the dialysis, the respirator, and then the drips, and the fluids and the monitors. it upset them almost as much as it did us to make the decision.

and it took quite a while. after they turned everything off, the room became very quiet and her body continued to breathe, very faintly on its own for about three to four hours while the last drip that kept her blood pressure from falling through the floor tapered off drip by drip and then finally everything stopped and it was over.

and so we sat with her and held her limp hand and talked to her for a while and waited.

she had become very ill very suddenly with an acute form of leukemia and in the early stages, as her blood thickened with a lot of white blood cells, she had suffered a series of strokes, or clogs where the blood couldn't pass through to parts of her brain. before all the extraordinary measures, before she was on machines, before she lost consciousness and could still speak and argue somewhat, she tried to say a lot of strange things and didn't make a lot of sense.

but one thing she said did make sense. the night before she ended up on full life support for the weeks ahead, she kept saying over and over, “i have to go. i have to go.”

and so i guess she did.

and we had to let her.

we all have to go at some point.

in this Schiavo family scene, it sounds really harsh to starve someone. to us it sounds very painful and slow. and the bonds of a parent for her child are so great, the attachment so strong, it seems unfathomable that they should not want to feed their baby. perhaps the love of her husband is the sort that loves her enough to be able to let go of her, but her parents can not help but be parents, trained to put her life before their own. everyone says the death of a child is the most severe and difficult form of grief. it would be the hardest to face.

and i know someone now through work, whose daughter was killed last summer. in a bike accident. hit some gravel, off a cliff and into a river. but her body was just found a few days ago. and see her husband, the son-in-law, well, he's been driving up here from out of state – about 400 miles almost every weekend. and he has walked and walked the banks of that river up and down. and nobody knew of course, after she fell, there had been a lot of rain, and she could be anywhere in the canyon or all the way to nebraska. well anyway, her husband who has been walking those banks, and walking those banks, he kept going to one spot. one particular spot and standing on a rock and just knowing she was nearby. he just knew it. well, last weekend was one of the first weekends since last summer that he didn't make it up. but they found her. right where he'd been looking all along. right under the rock that he had always found himself standing on, after hours and hours of driving and hiking and walking up and down that canyon.

that's that sort of love, that sort of responsibility he felt to take care of her, to see it through, to keep coming back and coming back all these months to find her and make it all right and put it all to rest.

of course he didn't have any decisions to make.

and i don't know i don't know and i don't want to say. had to deal with it my own family and that was a different matter unto itself. my mom has made it quite clear that she does not want extraordinary measures and the thought of hanging on and on with tubes stuck in her and stuff does not appeal to her in the slightest. can't say i blame her. she says when
the time comes, let me go let me go. and it will break my heart and i hope that time doesn't come. i hope she goes a natural on her own some night in bed. a long long time from now. but if it does come, i do know what she wants.

as a paralegal, i used to work at a firm that did a lot of estate planning. at that place, i ended up witnessing and notarizing a lot of wills.

and, along with their last will and testament, our clients would sign medical durable powers of attorney which give the healthcare decision making process over to another person should they become incapacitated or incapable of doing so themselves. additionally, as part of the full meal deal, then they would also sign a living will, which spelled out precisely, specified the option, that if they were in a vegetative state and/or unable to speak, with limited or no brain activity, and little to no chance of improvement, how long would they want to remain receiving nutrition and hydration? they had a choice of none, three to ten days, blank of time to be specified, or indefinitely.

not a single living will signing not a one not a single one that i witnessed in five years at that firm ever chose the “indefinite” option. not a one. 90 percent or so chose none or some three days. occasionally, about one in ten or so, chose ten days. sometimes they would say they chose the extended time because they wanted to give their family members time to get there and say goodbye if they wanted to.

but not a single one chose life at any cost, or even a prolonged period of time. not a one.

think about it. would you?

because i think most of us, in our current state, can't imagine that sort of life. can't dream of it. can't desire it. view it as the veritable fate worse than death. the living death. a horror movie kind of panic washes over us to imagine what that would be like, compared to the perception we gaze through currently in focus. typical to fear what we don't know, yet we all seem to have some sort of innate sense of knowing what our life means to us. it's very personal. maybe as personal as it gets.

interesting to consider the term “will.” last will and testament. living will. a person's will beyond themselves. after death. the will of the living projected into an uncertain future that gives them a sense of well being to know that the decisions regarding their personal property, their pets, their final statements, their final healthcare, their gifts to charities and the disposition of their remains have all been decided in the here and now. a preparation. a final say. it is their will. and
the living must honor it.

now i don't know what the actual numbers are, if there is anybody out there now of sound mind and body who would actually choose to be kept alive indefinitely. there may well be many. perhaps those are the ones who don't sign a living will or make their intentions and preferences known to their family. but i think in our hearts, we all know what we, ourselves, would want, should we be in the position ourselves.

we just don't want to be responsible for making that decision for someone else.

nor, when it comes down to it, would we want anyone else to make that decision for us.

posted by: limine at 07:58 | link | comments (10) |

Comments:

#1 24 March 2005 - 08:23

Speechless. Your eloquent voice is such a relief amidst the hysteria. The discussion of how we care for each other. Care. Not move in lockstep with what is politically favorable. I think that is what saddens us about the pandemonium. There is nobody there. The spectacle and arena of life and no death,and the din drones on. Thank you for your writing, J.

Leigh

#2 24 March 2005 - 08:30

When I saw that you had posted on Terry Schiavo, I got a fresh cup of coffee, prepared to settle in for a conversation with a good friend, which is the feeling I get when I read your blog. I'd been waiting for this particular subject to come up in your blog because I value your opinion.

I've had my own experiences with this, and, although the decision was not mine to make, I always felt at peace when the decision was made to pull the plug. The thing that irks me most about the Schiavo situation is that the general public and the government have taken ownership of the situation, proclaiming the right thing to do when they never knew Terry Schiavo. But then it is the people who did know her who have made this a public issue.

A horrible decision to have to make.

There is no dignity left here.

A war between two political camps, and the central figure cannot participate.

I've always had conflicted feelings about this issue, but you put this into such a clear perspective. It seems to me that what matters most is that my family would never have to make this decision for me. So today I have made my own decision, and I am putting it in writing as soon as I finish this comment.

Thank you. Not sure I believe in angels, but if they exist, you are one.

InMyLife

#3 24 March 2005 - 12:21

Wow, this is one heck of an interesting read. You're quite prolific and thoughtful. Bravo.

Irisha

#4 24 March 2005 - 15:54

I've been thinking about my own arrangements, of course, which have been simple because everyone in my family is of the same mind: no "extra" measures, everything for comfort, nothing for lingering. Simple and since we allagree, unproblematic.

But now it seems that I have to think differently. My cousin would be my health care surrogate and it would be for her to say. Aside from the difficulties inherent in such a saying, now I am seeing that there may well be additional factors to be considred. For instance, the rest of my family are religious in a way that is different than my way. This does not interfere with anything at present; as I say, we all agree and I certainly have no worries that they would serve some fundamentalist belief rather than our present wishes when the time comes. But what if in some indeterminable future it does becomes an issue, say in their chruch? Or what if in some all too identifiable future, I inadvertantly thrust my cousin into some dilemma between honoring what she knows to be my wishes and some opprobrium from state or church that would matter to her? No, it's not fair, I must see to literally spelling it out not because I don't trust my family, but because I can't put them in a possibly adversarial positon if I can do anything to prevent it. There's a lot more to this issue than I had been thinking; one's death is not (merely) one's own.

Anonymous

#5 25 March 2005 - 13:01

amen.

as usual, your zen approach to life, and now its ending, is quite beautiful and elegant.

JoeSchmuck

#6 25 March 2005 - 17:51

i've said what i had to say over at snowball's, but your effort here is co-resident in the starry heavens. i love you.

Anonymous

#7 28 March 2005 - 21:41

Such great writing about such a difficult topic. Very beautiful and provoking.

chelseagirl

#8 31 March 2005 - 11:01

beautifully said. the vastness of this question humbles (or at least should humble) us all. beyond the political/religious infighting lies the greatest tragedy of all, the loss of life. as you know terri passed on today and as a result we've all been diminished. r.i.p. and bless you for yr writing.