The Los Angeles Times posted an excellent article by Steve Lopez last month discussing the urgent need we all have to not only discuss our wishes with those who are likely to make them, but codify those wishes in written and legal form. For anyone who’s been thinking about doing so but is unsure how to proceed, please take a look. It has links to some great resources that might help.
There’s only one thing about the article I took issue with; the title. Having To Think About The Unthinkable. Because it reinforces the wrong but tenacious belief in our oh-so-death-averse culture that dying is an unthinkable (not to mention unspeakable) topic.
That’s just not true. Dying is totally thinkable. In fact, collectively, we do it all the time. I do it. So does everyone who works with hospice and palliative care. So does everyone who’s currently dying, and all the people that love them. So do elders who are fast approaching, people who get questionable results on scans, and those who experience a close call in a plane, on a highway, or in a hospital. Anyone who follows the news is exposed to reports about dying every day, and a movie about dying called Final Destination was seen by so many people, so many times, that it spawned three sequels and made its makers hundreds of millions of dollars.
In fact, our tendency to secretly think about dying a lot is at the heart of our entire preventive health care system. No one in their right mind would consent to (much less insist on) the discomfort, indignity, potential danger, and expense of so may foreign objects poking our veins, irradiating our tissue, and probing our various holes without the thought of dying as a strong motivation. So, no. The idea that dying is unthinkable is a total myth. Not only is it perfectly thinkable, there’s a respectable portion of the population secretly doing it at any given moment.
What I’d like to do is encourage everyone to think about it more openly. Because keeping all those thoughts and fears chained naked to the floor down in your seriously clenched gut only serves to make the prospect of dying more frightening, not less. Trust me on this one. Dragging the monster out from under the bed where you can negotiate with it and set up some ground rules is a very, very good thing to do.
Okay, yeah. I’m gonna die. You win there. But this is how I want to do it; no tubes, no persistent vegetative states, no bankrupting the family and leaving them destitute. However and whenever you decide do this buddy, I want to minimize my own suffering as well as the suffering of my loved ones. This is important to me.
I think a lot of people don’t realize that death is absolutely fine with that. Contrary to how it’s portrayed in Final Destination, death is a neutral force, not a malevolent one. It doesn’t want us to suffer and it doesn’t care if we take steps to prevent that from happening. It leaves full control for how we navigate the process to us. It’s like kayaking. We can either take time to study the river beforehand and craft an intelligent plan for those class 5 rapids with a forty-foot waterfall at the end, or we can fall into the boat backwards and wing it.
Which ride would you rather be on?
Death is like the river. It doesn’t care about the quality of our ride, it’s only job is to sweep us downstream. The rest is up to us. And if we decide we’d rather do it with foresight, skill, and courage? Then our relationship with the dying process is transformed from a catastrophe into a partnership and the gifts of that–the power, dignity, strength, love, sacrifice, generosity, and surrender it generates–remain long after we’re gone to help those we love recover and return to a full life.
Thinking and talking about dying, long before it happens, is well worth it.
Here’s a link from the article that has an excellent guide on how to have a conversation about end-of-life-care wishes with your loved ones. (You can use it as a starting point to have a conversation about it with yourself, too.) And to download a copy of your state’s Advanced Directive, here’s a link to a website called Caring Connections which has a wealth of other information as well.
And because I mentioned kayaking, here’s the trailer for The Halo Effect. It includes some unreal footage of kayaking elite and waterfalls. The opening narration tries to explain why these guys do what they do and is worth a listen, but if you just want kayaking footage, it starts at 1:00 into the trailer. It’ll knock your socks off.
copyright Dia Osborn 2012
The Odd and Unmentionable 
Hi Dia
Happy New Year!
Weirdly, I was thinking about just this topic last night as I finished reading Jim Harold’s Campfire Stories (‘true’ ghost stories). I asked myself if I was prepared for the inevitable – my death.
I must admit I shoved the monster back under the bed again. I reasoned that this year, I wanted to concentrate on living rather than dwell on the dying bit that is definately going to happen some day.
I used to carry an organ donor card. I found that, over the years, my wishes about which organs were donated (or even useable by then LOL) changed quite a bit. Lying on my death bed, if I’m conscious and lucid enough to know what I want, I worry that I might have a change of heart about my treatment at the last minute or nearer the time, and be unable to communicate this to anyone, despite any well thought out plan I may have made months or years before hand.
Am I wrong to do that or do you think I should sort this now?
Hey Chris– Y’know, I’ve been thinking about this whole thing for a long time, too and, in fact, I’ve decided to declare February “Advance Directive Month” for the hubster and I. (I’m embarrassed to admit that I’ve still never filled out a living will and medical power of attorney!) We’re going to finally sit down, grapple with and sort through all the questions and paperwork, and craft something that should ultimately help and protect everybody involved. My next post will be the preparatory launch for the project (it will officially begin in February) and I’m going to invite anyone else who wants to, to join us. (Does the UK have some kind of legal document equivalent to a “living will” that provides a place for citizens to lay out treatment wishes at the end of life?) I figured the more of us who are doing it, the more we can all help each other with the questions and fears and doubts and hopes and dreams that are bound to come up.
A couple of initial thoughts on your question: 1) Whatever end-of-life treatment options you might decide on for now should be reviewed every year to make sure they still reflect what you want later on. Life circumstances change as we go along, so of course our choices will evolve, too. 2) The fear you express, “what if I change my mind at the last minute?” is actually pretty common. Here are four thoughts on it:
a) There’s a phenomenon that I came to think of as “skydiver’s syndrome” where a person is comfortable with and certain about their dying choices beforehand, but then starts back paddling when the moment arrives. It was almost always due to the gulp factor. In skydiving, thinking about jumping out of a plane sounds great and exciting on the ground, but when you’re up at 10,000 feet, standing in the doorway and looking down for the first time, second thoughts are pretty universal. However, after a moment of reflection most people decide to jump anyway. Same thing with dying. Most people who’ve reached the point where the quality of their life has eroded to the point where they’re ready to die, won’t change their minds because of that particular flash of terror. There’s a huge difference between genuinely wanting to live and being momentarily afraid to die. Skydiver’s syndrome is all about the latter, not the former.
b) Having said all that, occasionally there’s a true conversion factor where a person suddenly realizes there’s something left they absolutely want to live for, in spite of all the discomfort, indignity, burden, and loss of control they’re now living with. If you really think you might wind up being one of those rare people, you’d probably want to err on the side of caution and let everyone know you want to opt for medical intervention to the very end.
c) This last point is actually a modified version of a). Sometimes a person thinks they’re ready to go, but when the moment approaches they realize they’re not quite ready yet. It’s not that they’ve rediscovered a strong desire to live so much as they just feel like they need a little bit more time before they go. Usually, people realize this before they’ve lost consciousness (or at least that’s when we know about it… 🙂 ) and they ask for medical intervention at that point.
d) And last but not least, sometimes shit happens, people change their minds but die anyway, and such is life. A good rule of thumb to remember is that people tend to die the same way they live. Controlling people try to control everything, fighters fight everything, and people who live with grace and courage generally die the same way. I think an indecisive person who constantly second-guesses all their choices would be the most likely to wind up in the circumstances you describe. If that’s not you, Chris? I wouldn’t worry about it. I really wouldn’t.
Does that help at all?
Please, keep reminding us Dia. I’m sure you get tired of singing the song, but you sing it so beautifully that we (some of us, at least) hear it, but then it is so easy to forget it……