My Living Will

Originally written Monday, March 21, 2005

Terri Schiavo is a woman living in Florida through the grace of medical technology who has been at the centre of a media firestorm for the last few days. She has been in a “persistent vegetative state” (as described by her doctors) for the last 15 years, after suffering severe brain damage due to a heart attack. She has no cognitive abilities as a result and will never recover.

Her husband has been fighting her parents in court, because he wants her feeding tube to be removed and they don’t (he says it’s what she would have wanted, they seem to be victims of wishful thinking and claim that she responds to them). He has won various court battles, right up to the state Supreme Court, but now Bush and the rest of the Republicans have taken up the issue because they claim they care about her. Perhaps they do, or perhaps a leaked Republican internal memo calling it a “great political issue” that can be used to stir up the pro-life religious right is more at the heart of their “concern”.

The controversy this is generating prompted a piece in the National Post called “Learning from Terri Schiavo”, written by Peter A. Singer, who is director of the University of Toronto Joint Centre for Bioethics. In the piece, he recommends that people create a “living will”: instructions on what to do in situations where one is alive but is incapacitated to various degrees. You can actually download a living will template from the Centre, which contains all the information you need to create one.

I started thinking about this, and realized that there are certain things I would like to make clear in the event that I am seriously incapacitated for any reason, especially since various family members and friends could quite likely have some serious disagreements about what to do in that unfortunate event. This type of instruction is deeply personal and very private, and for that reason, I’ve decided to share it with you. Be warned that if you are upset or disturbed by frank discussions of (my) mortality this is not for you!

The template lists common medical conditions where others are called upon to make decisions about life-saving treatment. It lists mild, moderate and severe strokes; mild, moderate and severe dementia; permanent coma; terminal illness, etc. Then it lists the procedures that could be called upon to continue life: CPR, ventilator, dialysis, life-saving surgery, blood transfusion, life-saving antibiotics, tube feeding. It also outlines what living with a particular degree of illness would be.

For example, it says that if you were to have a mild stroke, you would have “mild paralysis on one side of the body. You could walk with a cane or walker. Meaningful conversations would be possible, but you might have trouble finding words.” And so on. A severe stroke means “you would have severe paralysis on one side of your body. You would be unable to walk, and would need to be in a chair or bed. You would not have meaningful conversations…you would need a feeding tube for nourishment.” Etc.

Instead of laboriously addressing each condition and each treatment, I’m going to give you the condensed version of what to do.

Anything that can be described as mild or moderate: if someone who has even half a clue looks at me and goes, “hmmm, that looks mild or moderate”, then dang it keep me plugged in! Don’t withhold my Cheerios just because I have a string of drool hanging from the left corner of my mouth. I may not be making much sense on the outside, but inside I’m swearing that if I ever get out of this high-chair I’m going to make you pay for that last head-pat and “gosh, doesn’t Adrian look darling today!”

Anything that can be described as severe: well, that all depends on what it is and on what it takes to keep me going. I’m not exactly sure why, but severe dementia does not seem like a compelling enough reason to me to say, withhold my food and water via feeding tube. After all, you don’t have any clue what’s going on inside my head – perhaps I’m floating through clouds and conversing with marigolds. Severe brain damage is another story. If I’m in a “persistent vegetative state” like Terri Schiavo for longer than a couple years or so and there’s no way I’m coming out of it, then it’s time for me to go. I want my friends and family to get on with their lives, not sit around my bed trying to find hints of communication in eye blinks or involuntary muscle twitches. In both cases, I would rather that extraordinary measures were not taken to keep me alive. Food and water is one thing, liver transplants are another – someone else could use that liver more than me, after all.

Permanent coma: According to the template, “you would be permanently unconscious…you would need to be in bed, and you would never regain consciousness.” This terminology seems slightly deceiving. It seems to me that you wouldn’t know if a coma was temporary until the person woke up, and until they do, you could claim that it was permanent. If you pull the plug too quickly, then you’d certainly be right that the coma was permanent, but I dislike that particular brand of certitude. For this reason, I respectfully request that you give me a few years to snap out of it, say five to seven years. And in the meantime, please be creative: I might wake up if you play some good beats, replace my usual water with a tasty rum & orange, spoon feed me streak (medium-rare please), etc. No, sex is not out of the question either, as necrophiliac as it may feel to you. (The word “you” is used very specifically in this last sentence, if you’re uncertain if I really mean you or not, then no, I don’t mean you. You know who you are. And aren’t.)

Terminal illness: keep me going, but please don’t drag it out. Just like you, I have to die sometime, and there’s no sense in prolonging life unreasonably. I would like to have proper and caring medical treatment but I do not expect or request exceptional treatment. And if anybody approaches you with a hare-brained scheme to, say, download my brain into a computer, or freeze me for revival in 2250 (just in case they need a decrepit, diseased North American for some reason), the answer is always yes.

After death: just because I’m already dead and can no longer influence proceedings, does not mean you can do whatever you want. Here are some quick pointers. Follow these or run the risk of haunting.

– No stuffy funeral home with worn carpets, strategically placed tissues and plastic flowers. No queues of somberly-dressed people. No obsequious funeral directors with their cans of niceties. Put me somewhere else please: someone’s house would be great, or maybe a classy establishment somewhere that has a liquor license. Perhaps inform people as they arrive that they can’t say anything just for the sake of saying it: they ought to either say something original, or just smile. Their presence is enough.
– No religion. I’m serious. No cross on the coffin, no cross on the grave. No priests, ministers, pastors, rabbis, imams, shamans or witchdoctors. No spouting a bunch of nonsense about me and where I am now (how on earth do THEY know?), where I’m going, what my life or death was supposed to mean, especially from people who don’t know me.
– Instead, a little happiness please. A little realization that this is all part of the great cycle of life. Some words from anyone who knew me that want to say something – in fact, encouragement of those people. Some drinking. In fact, a lot of drinking, if people are so inclined. Please, for safety reasons, no high kicks. If things get too stuffy, Levo is nominated to burst the bubble.

Comment from Alevo:

I still think we should stuff you. We can make your love wand particularly rigid for that special someone. If she moves on, at the very least, you’ll make a provocative coat rack. Which is more of a contribution than most can hope for in death.