(This is a letter that the parents of Terri Schiavo received recently as they continue their fight to save their daughter)
I don't know if another personal story is of any use in your fight to save your daughter, but for what it's worth I'll send it on.
My brother went into acute respiratory failure last September at forty-five years old. By the time I got the phone call, he was on a respirator in the ICU of a small hospital several hours from my home. Think SARS without the contagious aspect and you'll get some idea of what condition he was in: as the Merck site puts it, “the survival rate for patients with severe ARDS who receive appropriate treatment is about 60%; if the severe hypoxemia of ARDS is not recognized and treated, cardiopulmonary arrest occurs in 90% of patients.”
There was the usual story: long drives, long nights, phone ringing at any old hour — “You'd better come and do you want us to resuscitate if his heart stops before you get here?” — that sort of thing, but he kept reviving despite every expectation to the contrary. There began to be a little hope, if only the ICU staff could get him off the sedatives long enough to wean him off the respirator. But you can't wean someone on a respirator off sedatives if he's in the full grip of an ICU psychosis. Every time they tried, he'd wake up just enough that it took most of the staff to keep him in the bed. Whatever world he was in wasn't a nice one, and the exertion of having a knock-down-drag-out with the nurses would then send his oxygen levels plummeting and I'd get another phone call.
But he kept living and by the time a month had passed, they'd figured out the right combination of anti-psychotics and he had begun to respond a little — the right way, I mean. So we began to think he might make it. That's when I made a major mistake and had him transferred to the ICU of a hospital only 45 minutes away instead of three hours. A teaching hospital, mind you.
To trim an extremely long tale, something somewhere got dropped, anti-psychotic-wise, and by the end of that first week in the new hospital a doctor ambushed me and informed me my brother was going to die anyway, so I should let him “die with dignity.” There were other things factoring into her opinions, but the main thing was that they couldn't get him off the paralytic they had him on because as soon as he'd start to wake up, he'd go into a psychotic episode and that would start him crashing again. So they needed my permission to bring him off the paralytic long enough for him to be able to breath on his own, then they'd pull the life-support. Otherwise, it would be legally murder.
What “dignity” had to do with somebody suffocating to death, I failed to see, but the ambush took me utterly by surprise. I tried to tell them what the other hospital had done and how he had been improving when this hospital got him, but it was to no avail — he had blood clots now and probably had brain damage from all the crashing and he was probably having seizures, and blah, blah, blah. I, being of a somewhat timid nature, meekly left the ICU intending to come back the next day to see him taken off life-support. We came home and started calling relatives.
It took awhile, but finally by late that night, my brain had kicked in along with a lot of pent-up rage over recent events in the news,* until I was practically glowing in the dark, I was so furious, and I expressed that fury in a blunt letter to the lot of them, which my husband dutifully delivered by hand early the next morning. (“If you can make him comfortable enough to die, why can't you make him comfortable enough to live?” “We can always kill him later; we can't resurrect him.”) This was not enough to sate my newly savage self, however, and so the nurses got an earful when I got to the hospital, which resulted in a long discussion in the meeting room.
So they put him on the anti-psychotics he should have been on all along, in a week or so he was transferred out of the ICU to Intermediate. This, of course, meant a whole new string of doctors, and the “What will his quality of life be?” business to endure, but it was just tough cookies. One or the other of us showed up there every day, right on through Christmas, and he got off oxygen and then he had his trach-tube removed and started eating again and went to physical therapy and one January day, lo and behold, he went home. Wobbly, frail, confused, forgetful, but home.
Two months later he was buying books and shopping at Walmart. He'll be on a lot of medicine for the rest of his life, but that's a minor detail. Last time we visited him, he took us out to show me the garden he'd started — that and he had us take him to the nearest pond so he could release an inch-long snapping turtle he'd rescued from the cats.
And the reference to the news?* If I hadn't been seething for weeks over the attempted murder of your child, my brother would now be ashes.
I've been rather fierce ever since.
*See also:
U.S. Supreme Court Rules Woman Can Be Starved to Death Over Parents' Objections
