I want them to want me because I will need them to need me but if that’s not going to work, I want a lawyer.

Every time Gretchen saw the forms on her desk at home, a wave of resentment rose. How did she know what it was like to use a feeding tube? Or a ventilator? Or have minimal brain function, for god’s sake? It was like asking an eight year-old to sign up for – or against – puberty.

Oh sure, she fumed in the dark, awake and annoyed. Tomorrow, Dr. Gabriel would repeat the official line: She could choose all medical interventions. She could elect to have whatever she wanted.

Oh, that was such bullshit. Who was going to pay for all this choice? Which meant it wasn’t really a choice at all. The problem wasn’t too much extraordinary medical treatment, it was the limits of ordinary medicine to worry about, mostly financial. She didn’t have a problem being kept alive through artificial means now – she’d never seen a dollar bill push out of the dirt in spring – so she didn’t see any reason to assume she would resent it later on.

 

And who could count the number of machines she, and everyone else, already depended on? She’d adjusted to the Breathe-Easy. Nobody said adjustment was easy. And nobody said it was mandatory. But nobody could tell her that that a Do Not Rescucitate (DNR) discussion was neutral; the default was all about saying no. It was just a question of to what. It was about the healthcare industry wanting to limit its costs in the name of limiting suffering by conditioning people to choose death. Easy marketing. Who would want to live like that?

It wasn’t difficult to pit disability against dignity. Medical science and technology had inadvertently created a vast and growing group of expensive people: preemies, people with treatable but chronic conditions, vets who survived injuries that would have killed them in the past, and a booming crop of aging people. Except for the preemies, many of them were the kind of people who needed places like the free clinic. Winnowing out the genetically defective was expensive in itself and time-consuming. The old ways of attrition were hampered. It was time to find new ones. Coercion and assault were out, and nudges were in, at the beginning of life with prenatal screening, genetic counseling, and “rational” debate about whether a disability negated personhood after birth and made assisted suicide the path to dignity. In times of trauma and at life’s end, it was the era of the advance directive and the DNR order.

Gretchen’s restless choice at three am was to sit up, pull off the Breathe-Easy headgear, lurch to her desk, and add one little word and subtract one little word to the form. She imagined a much more upbeat-sounding Do Resuscitate By (DRB) order.

Do Resusciate By (Gretchen imagined the form reading):

“Playing Al Green’s Greatest Hits in my room (please, no cover bands, the CD will do nicely), and frying bacon once a day somewhere nearby. I would like a cut lemon waved under my nose each morning, clean jammies, somebody to elbow me in the ribs occasionally and say, ‘Get it? Haha, you get it?’

“I would like any comments directed to me to be trivial and gossipy whenever possible.

“If someone wants to read aloud to me, that’s fine, but it had better be something you’d want to read anyway and not just something you think will make you look smart. And no leaving me hanging on the ending.

“An affectionate cat should be placed periodically on my pillow where she will form a type of cat-hat, and her purring shall be the sound of a lawn mower on a summer evening.

“I would like my family to decorate me for the holidays, telling each other they’re going to get nasty looks from the social worker but there it is in the DRB, I wanted it this way. “I want an Edith Piaf impersonator trained in the martial arts to take out anyone who starts blathering on about me ‘regretting’ whatever’s happened to me.

“I want them to want me because I will need them to need me but if that’s not going to work, I want a lawyer.

“I want what’s behind Door #s 1, 2, or 3; I don’t want the box Jay is carrying down because the box is what I’m going home with, anyway. Or in, to be more exact.”

There was more. Under Notes, she imagined a dense, single-spaced block.

“Dear Valued Healthcare Provider,

“I’m glad everybody’s so concerned about honoring my choices. I choose to have my medical care continue regardless of ability to pay or insurance coverage, deductibles, prescription benefits, or other cost issues. Whatever the President and the Fortune 500 Company CEOs get is what I want. No offense to whomever’s reading this, but I want the best. If the best is skiing in Gstaad, I would like her or him flown in.

“I want pain medication provided in doses that are medically indicated, not governmentally sanctioned. I want my family to have in-home health workers, who are paid a living wage, to provide the bulk of my care. If returning home’s not possible medically, I would like the nursing home I reside in to be a small, immaculately maintained house, staffed by well-paid professionals who are ever-vigilant to their colleagues’ potential abuses, and their concerns immediately investigated by a powerful regulatory body that makes residents’ safety and comfort their only interests.

“I choose a government that regulates health- and medical-care pricing and budgets accordingly, allocating adequate funds for the actual needs of its citizens.

“I know what you’re going say. I mean, once you stop laughing incredulously at everything you just read. You’ll say, Enough nattering on about an ideal world, be realistic.

“No. That’s what I say No to. As the kids are saying, though it probably came from a bunch of radical crips, That’s not the way I roll. It’s not realism to counsel acceptance of an unjust system. It’s cowardice. There’s more than enough to go around. It’s a lie to say there’s not.

“You’ll say its fine for me to make this choice to continue on in whatever wretched state I’m in but medicine is not in the business of telling people whether they should live or die.

”But of course it is, and it does, because medicine is a business. ‘Will not cover the cost,’ means ‘You should die.’

“Medicine speaks a brutal language and it’s one every doctor and nurse is forced to speak no matter how good-hearted they are. So they fudge the translation. That’s why there will be a lot of assurances to my family that I am suffering unnecessarily. I may not be feeling, thinking, or wanting anything but somehow I’ll still be managing to suffer. There won’t be any doubt about my suffering even if you can’t quite classify me as persistently vegetative or minimally conscious. Every other ability I had can be gone but, according to the experts, that capacity to suffer will survive better than a cockroach in a dumpster.

“Or so you will say. But you won’t know. Brainwaves don’t speak about experience in any language we can understand.

“Maybe it’s a kind of life I could never imagine. Or imagine wanting. Maybe I’m gone, gone as you knew me, certainly not productive, or communicative, but maybe not locked inside my body screaming to get out.

“It’s not that I have hope about this. I have uncertainty. Big difference.

“Is that the worst? To lie there, insensate, seemingly unresponsive, though you wave lemons and play music and bring little animals to my side; to be unreachable through intellect though you try to understand me, unmoved by any force of your will, the cause of much argument; in the end maybe the prize between warring factions who will each claim my will is on their side?

“The big joke is that you won’t be playing god with me. Think of it as me playing god with you. Consider what I create: a world of selfless compassion or heartless cruelty just by being there, yet I have so little value and such a high price that all you will want to do is be rid of me. And then you will have lost your humanity after so much talk about personhood.

“That is one back assward way of practicing medicine.”

excerpted from The Cure for Gretchen Lowe
2006

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