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.

Really most sincerely brain dead?

On Christmas day, a friend posted a link on my Facebook timeline to an article about a tabloid-ready story of a father, George Pickering II, who held a three-hour stand-off with the police, initially at gunpoint, to prevent a hospital in Texas from putting his son on a "terminal wean," after they proclaimed him brain dead. That means they were slowly withdrawing his life support. Another son disarmed their distraught father.

The doctors had convince that son and their mother--the father's ex-wife--to allow the supposedly brain dead George Pickering III to die. I guess a terminal wean is supposed to be gentler than yanking the plug, slowly easing him into his grave. The hospital contacted an organ donation center that a death was imminent.

The hospital had appointed his ex-wife and other son as guardians of George, Jr. The father admitted that he was drunk when he pulled out his gun, but his desperation was real. “I felt hopeless," he said. "They were moving too fast. The hospital, the nurses, the doctors.” His son had suffered a stroke, but he was convinced that his son wasn't brain dead. And indeed, during the siege, his son squeezed his hand on command three or four times. That reassured him that he would be able to convince the hospital that the junior Pickering wasn't in fact brain dead, and he eventually surrendered.

Was he fooling himself? Out of his mind with denial? Or just drunk? No, no, and no. The standoff occurred in January of 2015, Today, George Pickering III is fully recovered. This is what he has said about his dad's actions, "There was a law broken, but it was broken for all the right reasons. I’m here now because of it."

There are so many things about this that are disturbing that I hardly know where to start. When I recounted the story to Keith and Joella, I was surprised at the level of anger I felt welling up. First, how could they so confidently proclaim the son brain dead? If they had performed a simple EEG on him, they would've seen that he still had brain activity, as mine showed. My doctors never said I was brain dead, only that I had "profound brain damage."

Next, there was the rush to "harvest" George III's organs. Um, maybe we should wait until they're actually brain dead, what do you think? I'm a strong believer in organ donation--I'm a donor myself, if any parts of me are still useful. But this ghoulish eagerness to give up on him and give his organs to someone else, who is of course very deserving of them, if it weren't for the fact that George III is happily still using those organs.

One of the reasons people are afraid to be donors is that they fear there might be just such a hasty decision to call them dead while they're still fresh, so to speak.

But I have to go back to the diagnosis of brain death by the Tomball Regional Medical Center in Houston. Not being a doctor, I can't imagine what lead them to this conclusion. They couldn't have followed any of the standard procedures to diagnose brain death, which is irreversible. Once brain death occurs, there can be no recovery. And the diagnosis should be pretty cut and dried.

However, a few days after I learned of the Pickering's drama, I read a shocking article in the LA Times about the differing definitions of brain death among hospitals. Many of their protocols haven't kept pace with the science of this literally life-or-death diagnosis.

I'm reminded of the issue I've pondered countless times about the one in five consciousness disorder patients with covert cognition. How many of them have had their plugs because they were written off as basket cases, as I was? But until now, I didn't have the same worry about those who have been diagnosed as brain dead. After all, nothing more could be done for them...assuming they're really most sincerely brain dead.

Obviously, you can't endorse the father's desperate gambit, but you can certainly sympathize with his desperation. After all, he yelled, "I'll kill you all," as he pointed his gun at hospital personnel. But, the fact that his son was about to have his life support shut off, yet he's now fully recovered, does tend to lend credence to his sense of urgency to action. The courts seem to have agreed. One of the charges against him were dropped, and the other was reduced to time served. This is what George Pickering III went on to say:

It was love. It was love. It’s the duty of a parent to protect your children and that’s all he did. Everything good that made me a man is because of that man sitting next to me.”

And he was sitting there because of him, too.