Advance Directives: Exploring the American Maze

After working with a local hospice for almost six years (and a book about dying for four and a half, and a blog about it for two) I still…still…haven’t completed my own advance directive.  I’ve been procrastinating on this puppy for over eleven years now.  Which is a record.  Even for me.  

So, why?  I finally asked myself.  What’s the hold up?  And when I finally looked past all the chaos and screaming inside the answer was ridiculously simple.

Um…I guess I don’t know how.

So I’m now looking into it and these are the posts that chronicle my little journey of exploration.  And if they can help anybody else?  Well, that’s just double dandy.

Without further ado I give you: What I’ve learned so far about how to do an advance directive in America in 2012.

Part I: February Is Hereby Declared Advance Directive Month. Join Us!

Confession: I haven’t done my advance directive yet.  I’m embarrassed to admit it, but there it is.  In spite of my harping and spouting I haven’t walked my own talk.  (Not entirely sure why but probably because this shit is not only scary, it’s confusing.)

Part II: What Is An Advance Directive? (Or Why I’ve Been So Confused.)

IN SPIRIT, an advance directive is a way of letting everyone know what kind of medical treatment you do and don’t want if you aren’t able to tell them yourself.

IN PRACTICE, an advance directive is a set of actual, legal forms to fill out and this is where things start to get very confusing.

Part III: Advance Directives: Forms and Where to Find Them

In this post I plan to go over some of the different kinds of advance directive forms that are out there, a few different options for filing them, and some of the pros and cons of each.

Part IV: Advance Directives: Will They Be There When We Need ‘Em?

In the last post I researched some of the advance directive forms we can choose from.  The next step is figuring out the ideal way to get our completed forms into the hands of those who will need them.  There are a few ways to do this:

Red Flag: Could Doctors Bypass Our Medical Proxies With Electronic Access To Advance Directives?

I was just reading an article titled Handful of states promise physicians online access to advance directives  in, an online news source published by the American Medical Association, when I came across the following disturbing passage:

Part V: Advance Directives: Best To Wish Carefully With A Genie

After eleven years of procrastination, our self-declared Advance Directives Month has arrived and the hubster and I are finally tackling the forms. It’s going a lot better than we expected.  A LOT.  Like finally-easing-that-horrible-fear better.  Here are a few things we’ve learned so far.

Part VI: Advance Directives: Mine

In this post I wanted to share a smattering of specific thoughts and choices coming up for me as I fill out my own advance directive.  I wanted to do this just in case 1) someone might benefit from an example, and 2) anyone reading this may somehow, someday be involved in my care.

Part VII: Advance Directives: Ours

I was just reading an article titled Handful of states promise physicians online access to advance directives  in, an online news source published by the American Medical Association, when I came across the following disturbing passage:

Part VIII: Advance Directives: Dying Inside Our Big, Hairy Healthcare System

Turns out there’s a huge, third party squatting in the room with us, as we wade through our advance directives.  It’s our healthcare system.  We didn’t realize until now what a disproportionate influence it wields on our choices about dying and I’m struggling with some real sadness about it.Out Of Town And Back Again (With Advance Directives In Tow)

Part IX:  Out Of Town And Back Again (With Advance Directives In Tow)

Everything suddenly got very final and real, and I kept hearing a heavy door swing shut with a key turning in the lock.  At first I struggled with the feeling that, by signing the thing, I was somehow giving up all my rights and instinctively, I started backing away and questioning the wisdom of the whole project.  I was surprised at how powerful…how primal…the wave of fear was.

Unthinkable? No, Dying Is Perfectly Thinkable.

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.

Quick Note: Another Great Resource for Advance Directives

Turns out something like a National Advance Directive Month already exists.  Only it’s a day not a month, and it’s called National Healthcare Decision Day.  You can find out more about it here.

4 responses

  1. This is a very important topic. Thank you. Yes, the reason we delay doing the documents is that they are legal and therefore confusing and/or intimidating. I use the Five Wishes form ( because it is sensitive and it addresses both the choice of 1) surrogate decision maker and 2) medical issues of life support choices that the state forms do, and also 3) how I want to be treated, 4) the kind of comfort I want, 5) what I want my loved ones to know.

    The importance of the written document is that hospitals honor choices when a person has the papers.

    But more important than having the documents is having the conversation about your choices with the people who would be involved in case you have a medical emergency. If you have two children that disagree? You will remain on life support until all your organs fail.

    Does your next of kin know what to say when a doctor says, “She won’t live without a feeding tube, she’ll starve to death,” as one said to me when my 93 year old mother had a stroke? Or, “Let’s try the ventilator for a few days or weeks and see if she can get off it.”

    Voice your choices all the time. Compete the documents. Keep talking. If you change your choices, change the documents. This is one way to prepare yourself and your loved ones for the inevitable– and to prepare helps make for a peaceful ending.

    By the way, April 16 is National Healthcare Decisions Day. The website is filled with information to help organizations produce events and resources for free forms and workbooks:

    Loretta Downs

  2. As cold as it may sound, I seem to have evolved a practical approach to end of life issues. I think, when it just isn’t worth it, then you stop, or ask others to do so. (Obviously, it would be a rare person that could ask to be released from earthly tortures, but that’s what advanced directives are for.) But clearly, no one can predict all of the possible circumstances that could present themselves, so I think you just have to entrust your love ones to weigh out the “pros and cons”, the “cost/benefit ratio”. In simpler terms, how much hope is there for a recovery that you could live with, and is it worth all it? In reality, no one wants to suffer, but no one wants to die prematurely either. But if the state you are left in is hardly a case for living, then what is the better alternative? Both my parents wasted to a point of no return, and it just seemed pointless to put them through more stuff.
    The irony of all our medical miracles and breakthroughs, is that we are left with making decisions that no one is ever prepared to make. I think the conversation with those that may be saddled with such a choice is worth more that the paper, though the paper is what the physicians need to cover their asses.
    Do I seem just cold and heartless???? I hope not. Anyway,
    its late and time for bed…….. Sweet dreams, (oh what have I done to myself?!)

    • I think our collective instinct about dying hasn’t kept pace with our medical technology. Instinctually, we still tend to cling to life as long as possible, not understanding how that choice can now take us past what we actually want into a living nightmare straight out of a science fiction novel. There tends to be a big divide in understanding between people who have experience around dying and people who don’t. Experience seems to update our instincts. I suspect better education about dying would, too.
      And no…you don’t seem cold and heartless Jan. Hardly.

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