Thursday, January 7, 2016

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.

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Coma Girl

Coma Girl

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In July of 2013, I fell into a six-week coma and nearly died. When I awoke from the coma, I could barely lift my head. It has been a hard road to recovery. The doctors advised my loved ones to give up all hope for my full recovery, but while they were shining lights in my eyes to gauge my level of consciousness, I was telling them grumpily to leave me alone because I was trying to get back to sleep...in my coma-dream. I was experiencing covert cognition, and the coma-dream was my version of a near-death experience. I'm a skeptic, so I saw surreal images instead of spirits or dead loved ones. According to my research, as many as one in five people with consciousness disorders have covert cognition.

Not a miracle recovery, but a miracle of modern medicine

In 2013 I fell into a six-week coma and nearly died after I contracted legionella. The Legionnaire's disease was in turn triggered by immunosuppression caused by the prednisone I was taking for my rare autoimmune disease, dermatomyositis.

I suffered a series of strokes on both sides of my brain when the sepsis caused my blood pressure to plummet. I fell into a deep coma. My kidneys and lungs began to fail, as my body was began dying one organ at a time. My doctors told my loved ones to give up hope for my full recovery. They expected me to die, and even if I somehow lived, I would remain a vegetable or at best left so hopelessly brain-damaged that I would never be same. But unbeknownst to them, while they were shining lights in my eyes and shaking their heads, I was telling them in my coma-dream--my secular version of a near-death experience--to leave me alone because I was trying to get back to sleep. I was experiencing what is known as covert cognition, the subject of my Skeptical Inquirer article "Covert Cognition: My So-Called Near-Death Experience," which appeared in their July/August issue.

But it wasn't a miracle--despite what so many continue to believe--that I recovered so fully. I owe my life not to God, but the miracles of modern medicine, as well as the nature of the watershed-area brain damage I suffered, as I detailed in my article and in this blog.