Fast-tracked into the graveyard

When I was in the nursing home, I drew up a living will. A doctor explained to me my various options. He said I could opt for continuing life support for eternity, no matter how hopeless my situation (he actually used the word eternity); life support with a trial weaning, where I could be weaned off the ventilator to see if I could breathe on my own, though it could be turned back on at any time if I couldn't, or a do not resuscitate order. Well, the DNR was out of the question, but I thought about the other two options.

I'm not one who dreads living on life support. As long as I'm mentally there and not suffering, I want to live as long as I can, whatever the means. Been there, respirated that. But there are situations when it doesn't make sense to keep alive a husk of a person who is truly as profoundly brain-damaged as my doctors thought I was.

At the time, it made sense to choose the trial weaning option. After all, how could it hurt to see if I could do without the ventilator?

But here's the rub, given that my doctors were so ready to give up on me, despite the fact that I was, unbeknownst to them, covertly aware. Even worse, as I've recently learned, there are even cases of people effecting full recoveries after being declared brain dead by their doctors. Brain dead. Instead of a trial weaning, would it instead be a terminal wean, as was the case for George Pickering III?

The fact is, the more I learn about the limits of what doctors know--and their inability to acknowledge it--the more I doubt that I can trust doctors to fairly evaluate my condition. Yes, perhaps my doctors might switch the respirator back on after I failed the trial. But who's going to make that decision, and what will they base it on? And can I trust that they've done all the appropriate tests in the first place? The doctors in the case of George Pickering III clearly hadn't. A simple EEG would've shown that he still had brain activity, and was thus not brain dead. What snap judgements have they made based on the odds, as opposed to my actual condition?

Furthermore, I now no longer trust that the doctor who explained my options was presenting them evenhandedly. The way he phrased my choices betrayed the way he was trying to lead me. I'm not old, nor do I have a fatal illness. I shouldn't be a candidate for being fast-tracked into the graveyard.

The more I learn, the more I'm convinced that I should go back and amend my living will...while I'm still able.

Death panels were never real, but doctors informally create them every day.

The gift of life

Sunday I will celebrate my second birthday since I awoke after a coma from which my doctors thought I would never escape. My mother believes that my nurses were trying to gently nudge her toward pulling the plug eventually when they talked about how poor my quality of life had become. But was I really suffering? Unbeknownst the them, I was living through entertaining adventures in my coma-dream, like watching miniature zoo animals holding a tea party. As I passed this scene, I said, "They must be filming a kids' show," as if that would explain it. Dream logic.

About the same time, a doctor discussed with Keith what they should do when--not if--I started going into cardiac arrest. Yeah, I was that close to death. I know my believer friends think it was a miracle that I survived. To me, it was a miracle of modern medicine. Plus, I was very, very, lucky.

But what about those potentially one in five patients with covert cognition who haven't been so lucky? My mother and Keith weren't about to pull my plug, but I know a lot of people think, "He/she would never want to live this way." If it comes to that, they would make that terrible decision. How many of those unfortunate people are having their own coma-dreams, happy in their fantasy worlds?

Kate Bainbridge, the vegetative-state survivor I talk about in my upcoming (July/August) Skeptical Inquirer article, "Covert Cognition: My So-Called Near-Death Experience," has expressed similar concerns, as have others who were in the same situation.

As much as medical advancements saved my life, there is much that medical science still doesn't know. Indeed, the word about the latest findings about covert cognition hasn't yet gotten out to all the doctors in the field. My neurologist isn't even familiar with the groundbreaking research of Dr. Adrian Owen and his colleagues at the Brain and Mind Institute. He was the one who discovered Kate's covert cognition when he was still at Cambridge University. Thanks to Dr. Owen, Kate received therapy. Though she's severely disabled now, her cognition is fully intact. Like mine is.

I was fortunate enough to have Keith and my mother to read and talk to me, trying to keep my mind engaged. Much of what they said, read, and played for me leaked into my coma-dream. But I didn't receive therapy, physical or otherwise, because my doctors said it would be useless. I believe that my recovery might have been a lot shorter if I had received it.

Still, the doctors saved my life, and of course I'm grateful for that. I've gotten a second chance at life. But how many people have never had that chance because someone close to them thought they were saving their loved one from suffering? It's a wrenching decision for them, obviously. They're only doing it because of their love. But Dr, Owen has been able to communicate with people who were thought to be beyond hope--profoundly brain damaged--just like my doctors thought. Even if they don't wake up like I did, it may be possible to communicate with them. And then they can decide for themselves if they want to keep on living.

Being a writer, I feel an obligation to use my writing skills to educate the public about covert cognition. Maybe through my efforts, some of those one in five people will be celebrating more birthdays of their own.

While I was in the coma, apparently, Keith told me that when I woke up, I could use my writing to help people like me. Unfortunately, that's not one of the things I remember from my coma-dream, but he knew me well enough that it's come true.