15 March 2010

Another Day in Paradise

"Just another day in paradise!"

That's what my 89-year-old dad always says, when he passes a neighbor on his morning walk. Since he does not actually live in paradise, I guess what he means is it's a nice day and he's enjoying life.

It's pretty amazing, really. One morning, about two years ago, my mom found him on the floor. Exploratory surgery turned up three holes in his gut, and a section of necrotic bowel. They did an initial patch up, but nobody expected him to live. When he survived the first surgery they went back in for a more complete fix, and, to general amazement, he lived through that, too. He was on a respirator, on dialysis, in and out of intensive care (mostly in) for about a month. Nobody expected him to live.

Dad had been very clear about his end-of-life wishes. He did not want extraordinary measures taken to keep him alive. He did not want to live hooked up to a bunch of machines. He wouldn't want to live like that.

We had had that conversation, my parents, my brother, and I, sitting around their dining room table. It wasn't awkward or uncomfortable. He had the Advance Directive and all the necessary paperwork. He just laid it out. We all thought we understood exactly what he meant.

Turns out, when the time came, it wasn't that easy. For each treatment option there was a range of possible outcomes, and we had to try to guess which he would find acceptable, if he were able to decide, and which he would not. What if he lives, but he's confined to bed? What if he lives, but is left with a significant cognitive impairment? What if...?

As it happens, we got to have that conversation a second time -- kind of a 'before and after' thing. Dad's happy we made the decisions we did. He doesn't have much memory of the weeks he spent hooked up to machines in the ICU. He says he realizes he could've wound up severely impaired in one way or another, and says he wouldn't have held it against us had the decisions we made resulted in a less favorable outcome. I don't know if that's true, but that's what he says. He says if the situation arises again, which could happen, he's confident that we understand what he would want us to do.

If the situation arises again, I wish I thought it would be easier than it was the first time.

For myself, I don't want to wind up hooked up to a bunch of machines either. Beyond that, I don't know that I'd be able to draw a line in the sand. As a kid I remember reading about a woman who was paralyzed in a skiing accident, and thinking I'd never want to live in a wheelchair. More recently I remember thinking I can deal with not being able to walk, as long as I can use my hands. The point at which I'd say 'I wouldn't want to live like that' has shifted significantly over the past couple of years. What if I couldn't see? What if I couldn't speak? Would I say 'If I ever get to the point where , I wouldn't want to live like that'?

No lines in the sand for me, thanks. This may not be paradise, but it's another day in Seattle. And that's OK.


  1. Zoom, it seems like a lot of folks are writing about this topic lately. I've been reading ALS blogs and websites thinking about how the line shifts and changes. And, thinking about where my line might be.

    You're right. Someone can be very clear with family yet the interpretation and application of wishes in complex scenarios is really hard. You can't anticipate every little aspect.

    I was reading through my Advanced Directive the other day and thought about how much interpretation is there. I have a feeling it will be the start for quite a few conversations down the road. So, hopefully my family and I will understand the spirit of each other's intent rather than thinking we can just rely on a black and white line.

    Oh, I really recommend doing ones Advanced Directive, Will, etc. well before it's needed. I was working on mine a couple weeks prior to brain surgery -- really bad timing :0

  2. My partner and I know the other well enough to make the right decision. My plan B friend knows also. Age must come into consideration for those of us under 70 and disabled. I have also considered in MY decision the life my loved one would have with me in certain states. We are exact opposites in most things. She wants life at all cost. I am ready to go anytime. LOL After she watched what her dad went through, she has softened on the "at all cost." He had a DNR but it wasn't found in time and his final days were NOT what he wanted. He suffered greatly, lost all his dignity, and all his talks about his wishes were ignored. *I* learned a lesson, after certain age I will get a DNR tatoo on my chest.

  3. Yes...I know. Had to make these kind of decisions more than once.

    Not so easy. All the "what if's" come into play...it is a hard topic.