I’m more afraid of being overtreated for dying than I am of dying from it.

I’m still plugging away at completing the old advance directive I started way back in February.  I know a lot of people say just do it….  

Just.  Sometimes I hate that word.

Although frankly, I didn’t think it would be that big a deal when I started either.  But clearly, my inertia is telling a different story.  The hubster and I actually filled out the forms months ago and, as expected, that part really wasn’t a big deal.  We educated ourselves, we weighed our choices, we made our decisions, and we wrote it all down.

Check.

It’s the next step that’s killing me.  All the follow-up conversations I’m supposed to have with loved ones, alternate medical proxies, and anyone else who’s likely to get involved if I ever hit the point where I can’t make medical decisions for myself.

Fear is a powerful, powerful thing.

But finally, last week I sat down with the friend I’ve asked to be my medical proxy in case the hubster can’t do it and we started feeling our way through the labyrinth together.  It was a fascinating conversation and helped me to really boil things down to my own bottom line.  After some initial flailing and panic while trying to explain, there were a couple of important realizations I came to that helped settle me back down.

A FEW BASIC TRUTHS ABOUT MYSELF:

1)  What happens to the hubster and kids during that kind of crisis is as important to me as whatever is happening to me.  I love them and I don’t want their needs or wishes disrespected or ignored anymore than mine.  Even though it’s not my first choice, I’m absolutely willing to go through some additional suffering and linger for a while longer if they need the extra time.

2)  Money is a very big issue for me.  I do not…DO NOT…want a massive wealth transfer happening at the very end so that nothing’s left afterwards for the hubster and kids.  So don’t anybody feel guilty about considering the financial consequences of any decision.  In fact, feel guilty if you don’t.

3)  Control is an illusion.  All I can do is try and communicate now the best I can.  In the end though, whatever is going to happen, will.  I need to try and remember that, breathe, and surrender again. (And again and again and again.)

4)  The one, single, most important, overriding principle I need everyone to remember and steer by is this:  I’m more afraid of being overtreated for dying than I am of dying from it.

So in a choice between erring on the side of choosing too little intervention or choosing too much, always, always, always err on the side of too little.  I’ve lived a huge and magical, unexpected life full of wonder, surprises, love, companionship, adventure, learning, and near constant amazement.  From a distance, I haven’t really minded the pain all that much.  If I was to go tomorrow, I’m so very, very, very good and grateful with it all.

So the bottom line is you don’t have to worry about cutting me short.  You can’t.  It’s impossible.  Honestly?  I kind of can’t believe I made it this long.  You guys just take whatever time you need…(just again, sometimes I love that word)…to get your hearts wrapped around the whole thing and say your good-byes, and then let me go.

And remember…I love you.  I’ve always loved you and I always will.  There are some things that can’t be killed.

copyright Dia Osborn 2012

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

(Continued from Part VIII: Advance Directives: Dying Inside Our Big, Hairy Healthcare System)

The hubster and I just spent five glorious day up in the Sawtooth Mountains.

Snowshoeing.  With heavy packs.  Uphill.  Both ways.

Kidding.

It sure seemed like it though.  The snowshoe into the family cabin at the beginning of any trip is always a bitch and this was no exception–a two mile trek from the highway to the cabin, uphill with fully loaded packs, after a four and a half hour drive to get there. The bad news was that the trail wasn’t groomed like we were expecting so Dane the Mangy Rescue Mutt (with bad knee and brace) started really struggling in the deeper powder.  (He made it though, and we’re more confident about his knee now than we have been in a while.)

The good news was that we got a late start leaving home so we didn’t actually strap the snowshoes on and start up the hill until about 8:00 pm.  It was already dark and the stars that night…the stars my friends…were outrageous.  It was one of the clearest nights we’ve ever seen and that’s saying a lot.  We rarely use flashlights because 1) you really don’t need them once your eyes adjust and 2) the electric light is so bright it dims the night sky.

As you may have heard, there was a spectacular crescent Moon/Venus/Jupiter conjunction going on last weekend and, sure enough, that trinity was hanging just over the silhouette of snow capped mountains as we got started.   However, the moon set after only twenty minutes so we had to content ourselves with a radiant swathe of Milky Way arcing over our heads from horizon to horizon while thousands of other constellations and stars filled the rest of the sky bowl curving down to the ground on either side of it.  (We made do.)  Meanwhile, the snow reflected all that diffuse light back into the air so that after a while it felt almost like we were trudging through a softly glowing snow globe.  I couldn’t get enough of it.  I just couldn’t.  I’m sure my face would have gotten frostbite from staring up through the bitter wind for almost two hours, except that my skin was too hot to freeze.  The heavy exertion was making me huff and puff and sweat like a pig.  (The hubster loved the stars too but was more preoccupied with trying to recall what were the exact symptoms of a heart attack.)

(Photo courtesy of Steve Jurvetson)

We’re getting older.  There’s no denying it.  And we’re not sure how many more times we’ll get to have these kinds of adventures.  Physical limits are getting harder to ignore.  But so far we’ve pushed on anyway because when you think about it, there are far worse ways to die than collapsing cradled in the wild beauty of high mountains while gazing up into pure, celestial wonder for the last time.

But not until we’ve finished our advance directives of course.

We packed these documents in along with everything else and spent one of our days at the cabin, pens in hand with a snowstorm raging outside, finally filling the things out.  It was surprisingly emotional.  We found it was one thing to sit and diligently read through them over the course of a few weekends, and something else entirely to actually write in our various notations, initial the desired boxes, and sign on the dotted line with each other as witnesses.

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.

But then I remembered something we’d read earlier, that if worst ever comes to worst and I’m finally lying unconscious and helpless and vulnerable somewhere, Somebody is going to step in and start making decisions for me. Whether I’ve filled out an advance directive or not.  Whether I’ve picked them to be the person or not.  Whether they know what I want or not.  And I suddenly got it…on a deep, gut level…that my advance directive is not the thing that will strip me of control and make me silent and helpless, it’s the thing that will help protect me in case I ever am.

That helped my resolve firm again and I was able to continue.

The hubster told me later that the fear he faced arose from a sudden and overwhelming realization that he will, absolutely, someday just cease to exist.  Poof.  Evidently, it was a huge moment for him but I never would have guessed it.  He didn’t look like he was sitting there reeling from the blinding, existential awareness of total, inescapable, physical annihilation to come.  From the outside he just looked absorbed.  Studying the paper in his hands, reading glasses perched on the end of his nose.  It’s not that he was trying to hide his fear from me, that’s just the way he is.  His courage is so unconscious most of the time that he usually doesn’t even realize that’s what’s going on.

We read and scribbled and talked about things for hours.  Sometimes we laughed, I cried some, but mostly we took turns trying to explain what we were afraid of, what we longed for, and how much we loved.  The process flushed out things that had been hidden and dormant for a long time.  Tenuous hopes and secret dreads, things to be examined, cradled in tender hands, and then placed into each others’ keeping in a final gesture of deep trust.

I’ve been really surprised throughout this whole process at the huge relationship component involved in filling out these forms.  Maybe because it was also a research project for me and we took so much time with it, maybe because we did it together as partners, I don’t really know but I tell you, it’s added a whole new level of meaning to Till death do us part. Overall it’s been a healing journey full of deepening intimacy for the hubster and I.  We’ve shared things we didn’t know we hadn’t shared, and revealed things we didn’t even know ourselves until now.

I guess if there was any advice I could give out of everything we’ve learned so far it would be this:

Do your advance directives together.  Find someone else who hasn’t done their’s yet, or who hasn’t looked at it in a long time if they have, and hold hands as you walk through it.  The person you pick doesn’t have to be the same person who will be your medical proxy.  (Although, if experience is any guide, you may want them to be by the time you’re done.)  And it doesn’t have to be only one other person either.  It could be a group…if you could find that many people brave enough.  I strongly suspect that this is one area of life where the maxim There’s strength in numbers holds especially true.  If you can possibly help it, don’t try to take this journey alone.

And take your time with it.  Break the process down over a few days or weeks.  If you let yourself sit with the questions for a while, you may be surprised by some of the answers that come up.  I know we were.

Y’know, it’s kind of funny.  In walking through our advance directives, it almost felt like an opportunity to practice for the real thing…for dying…from a safe distance. Emotionally speaking I mean.  In our imaginations the hubster and I got to slip on the experience of profound vulnerability and dependence that goes with dying temporarily, while we’re still healthy and vital and strong.  It was scary in some ways, but far less so than what I’d imagine it would be like facing it for the very first time in extremis.

And we got the chance to start honing a couple of the emotional skills that are essential to have during dying…things like the ability to surrender to the inevitable, to be openly vulnerable and reveal our needs to one another, to gratefully accept the help that’s offered and to be dependent gracefully.  Things that, in our culture anyway, we tend to think of as weaknesses or failings, and yet they’re not.  Those are things that actually require tremendous courage and strength.  I didn’t realize how much before.  To openly accept the willingness of another human being to step up and care for us isn’t easy, and accepting it with dignity is rare.  (Especially for somebody as controlling as I am.)  And yet the hubster confided a couple days ago that, during this whole process, he’s felt increasingly overwhelmed and touched by the depth of my trust.  Our willingness to open up and be vulnerable with each other turned out to be, not a burden, but a gift.

So anyway, these are just a couple of the things we discovered while filling out our advance directives.  It’s been a beautiful, frightening, surprising, hard, uplifting, sorrowful, strengthening, sobering, illuminating and profoundly intimate journey for us both.

And it’s still not over!  Next, we’ve set up an evening to meet with the people whom we’ve selected as our alternative medical proxies, to get their consent and share our advance directives with them. Then we need to get the forms notarized, witnessed, copied, distributed and filed. (Note: Because Idaho’s laws place unusually high hurdles to a simple, low intervention dying process, we’re taking precautionary legal steps with our advance directives that wouldn’t be necessary in most other states.  It’s extra insurance against something that probably won’t happen but still…better safe than sorry.)

And then, after we get ours taken care of, I’ve got the kids in my sights for theirs.

To wind this up, here are a series of photographs taken of some icicles hanging outside the cabin window during our recent stay.  The changes they went through over the days we were there feel similar to the changes the hubster and I have gone through on this whole journey with advance directives.

Stage One:  Glowing and happy from the previous night’s starlit adventure.  Delicate, sparkly and naive:

Stage 2.  Advance Directives Day–blasted by the elements, bewildered, and storm bent.  Not so sparkly anymore, but still…multiplying and stronger:

 Stage 3.  Skies are clearing, brunt of the work is done.  The amount of growth that happened during the storm is kind of surprising.  Thicker, longer, and a lot more:

Stage 4.  Older, calmer, wiser, stronger.  Not so much sparkling as glowing. We’re a lot more confident now that we can weather the storm. 

copyright Dia Osborn 2012

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

(Continued from Part VII: Advance Directives: Ours.)

Giants and Freia by Arthur Rackham

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.

We discovered that the choices we’re making today are different than the ones we’d be making if we were either very wealthy or had access to universal health care.  

The unsettling truth is that we’re both opting to die a little earlier for reasons of cost and care burdens.  In our current healthcare system, dying could cost so much for medical intervention and help with day-to-day care, that it could easily leave whichever of us was left destitute and/or with broken health.  It’s happening every day to people just like us…middle class with decent insurance (I saw a couple of tragic examples when I worked with hospice)…and the hubster and I simply refuse to do that to one another.

I had a very hard moment the other night when I suddenly realized I wouldn’t mind so much, lying in bed for months or maybe even years, slowly declining while looking out the window at my beautiful garden, as long as I could still write and visit, study and learn, meditate and muse.  It surprised me.  I’d always thought if I couldn’t hike, escape to the mountains, garden and swim anymore, that I’d be done.  I had no idea that I could still be happy without those things…if only the burden of care was spread across the shoulders of enough people to protect them all and care for me well.  If only we were wealthy and could afford to hire them.  If only our healthcare system was universal…and actually helped with home care to begin with (which it doesn’t.)

For the first time I realized I’m not so much afraid of being disabled as I am of destroying the people I love with the burdens of my care, or of being cared for negligently in an institution somewhere (I saw too many tragic examples of this), and I experienced an unexpected and poignant wave of love and deep longing for my life.

On the one hand, I’m irrationally wishing we were born in Canada, or England, or Cuba instead…some country with universal healthcare that cares about all its people equally.

On the other hand, I say irrationally because I know that if I turned Fate loose for a do-over like that, we might just as easily have been born in Bangladesh or Somalia.  Some other country where dying can happen even faster.

I suppose there’s no useful purpose to be had in bemoaning destiny.  The hubster and I were born in this country, we’ve lived here all our lives, and this is where we’ll die.  And to tell you the truth, we don’t really want to die in another country with better healthcare anyway, even if dying here could come earlier and suck more.  We’ve loved our lives here.  This is our home and no country is perfect…a corrupted healthcare system just happens to be our particular Achilles heel.

So yes, all things considered, it’ll be okay if we wind up dying a little earlier here than we would if we were living in an ideal world.  I guess comparing our situation to perfection isn’t the best idea.

(Next the conclusion: Part IX: Out of Town And Back Again (With Advance Directives In Tow)

copyright Dia Osborn 2011

Part VII: Advance Directives: Ours

(Continued from Part VI: Advance Directives: Mine.)

Editor’s note: Today, I decided to just write a quick post and publish it without proof reading.  It may be the only way to save it from the fate of the other three posts I wrote this week.  (Overwritten, nitpicked, and abandoned.)  Please forgive all the errors.  

In the last post I tried not to reveal too much about the hubster’s choices out of respect for his privacy, but since then he’s let me know he’s okay with it if I do.  I’m grateful because it’ll be easier this way.  Each time we’ve sat down together it’s become more apparent that, while each of us is trying to define our own individual wishes, this process is ultimately ALL about relationships.  We don’t live in a vacuum and evidently we won’t be dying in one either.  If we don’t make the effort now to discuss this with everyone else who absolutely will be involved if either of us dies in the next few years, then it may not mean shit how brilliantly we write it down.

Getting this paperwork completed and filed is only the first step.  I may have declared February our Advance Directive Month, but 2012 is evidently going to be the Year of our Advance Directives, too.  I foresee a lot of conversations about dying in our future.

And that is, by far and above, the scariest part of this whole thing for me.  As anyone who’s been reading this blog for a while knows, I’m not particularly afraid of facing death.  What I am very afraid of is asking other people, in person, to leap across the abyss and face it with me.

Talking about dying is just so very, very taboo and I’ve already put people off with it so many times before.  It’s one thing to chat about it here on the blog, but it’s something else entirely to look directly into another person’s horrified eyes and say Hey!  Ya wanna come over and talk about plugs and when to pull ’em?

I did make the leap last night though, with Beloved Daughter.  She came over so we could watch the final episode of Downton Abbey together and before we sat down I tentatively asked if she’d be willing to fill out an advance directive with me or, if not, at least let me know what she’d want in a worst case scenario.

Her response totally surprised me.  She was not only willing, she was actually enthusiastic about it.  She even started telling me a couple thoughts she’d already had about it and she’s only twenty-five years old.  I was so relieved.

Maybe that first leap is going to be the hardest part.

A couple of specific items we discussed this weekend:

1)  Alternate medical proxies…just in case we’re in a car crash together and can’t serve as each others.  We both picked friends instead of family members.  (We haven’t actually asked them yet though.)  I had a couple of reasons.  My friend is a nurse who’s also into holistic healing and we share a similar preference for minimal medical intervention.  She’ll be more able than most to successfully bridge the gaping divide between the two systems.  I also didn’t want to burden either of the kids with having to make those choices.  They’ll be going through enough.  For the hubster, it was a toss up between his friend and his doctor-brother.  The friend won because he lives in here in town and proximity trumped professional skills.

2)  No surprise: Idaho’s statutes concerning end of life choices are extremely conservative.  Sigh.  Evidently, it can be a challenge here to decline things like blood transfusions and antibiotics because they’re not considered “life sustaining” treatments like artificial nutrition and hydration are.  The hubster and I could be 200 years old, paralyzed, and lost in dementia, and the law would still require that we’re treated for pneumonia.

We’ll have to write specific requests in our advance directives stating that we would absolutely want to have all such treatments withheld, and then also make sure we discuss it with our doctor to find out if he’s okay with it.  Honestly?  I don’t think it’ll be a problem as long as we do our footwork now.  The laws err on the side of caution but from my experience working with hospice, common sense tends to prevail in real life.  Medical professionals involved with end-of-life care tend to be very respectful of individual wishes.

That’s it for now.  It’s hard to stop because there’s so much we’re talking about and learning that I could write five posts a day and not cover it all.  I started this journey thinking an advance directive was just a set of forms we’d fill out and give to a couple of people, and then we’d be done.  However, I’ve discovered that they’re really (surprise, surprise!) about our life and the people we love.  I don’t know why it surprised me.  I’ve known along that dying is all about life, too, and that including it in my life now, long before I die, makes everything I experience richer and scarier and more adventurous and full.  Why should advance directives be anything different?  I mean, really?

The hubster and I will actually fill out the forms this weekend.  We need to check with our friends to make sure they’re okay to be our medical proxies before actually filing them with the online registry.  I’m not sure we’ll finish by the 29th (leap year!) but if not it’ll be in the week following.

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

copyright Dia Osborn 2011

Part VI: Advance Directives: Mine

(Continued from Part V: Advance Directives: Best To Wish Carefully With A Genie)

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.

Just kidding.

(Not really.)

But before I start down that road I want to remind everyone that whatever I say here is a personal thing.  It’s a reflection of me and what I’d like to see happen with my care.  It’s not what I think anybody else should do.

When I was working with hospice my first job in any home was to find out what the people who lived there valued, believed in, stood for, and loved…and then work to support them from that foundation.  I did this because the dying journey is pretty turbulent and, for the most part, people need to harness the emotional and spiritual strength they’ve already established, not try and develop something new.  It’s almost always a bad idea to change boats in the middle of rough water.

Jared Alexander on Hazard Creek in Idaho

Any boat is better than being dumped out and beaten against the rocks for the duration of the journey.  That’s why I always tried, as best I could, to hang my own beliefs and personal preferences on a hook outside the door.

This post is only about the things hanging on my hook.

And now, specifics.

Here’s one of the most valuable directions we’ve come across so far:  Fill this thing out based on what choices we’d want made for us right now.  I’ve always thought of an advance directive as something that would come into play…oh…years and years from now.  Like when I’m eighty-three and dying of skin cancer from all the second-degree sunburns I sustained during my haole childhood years in Hawaii, for instance.

But no.  Turns out I need to think more immediately.  Like for the next five years (after which I’ll review and update my directive for the following five years, and so on.) Which leaves me facing the question:  If my life was threatened right now, at fifty-three years old, would I want more life sustaining treatment than I would want at a terminally ill eighty-three?  In other words, do I want more aggressive medical intervention?  Will I accept more risk?

I suspect the majority of people would say yes at my age, however for me it’s a little more complicated.  Because I’ve already been fighting the good fight to survive depression for two decades, my troops are on the depleted side and I’m a little battle-weary.  My basic will to live has taken a considerable beating and I don’t have the reserves I once did.   Just the idea of having to mount yet another massive resistance in a brand new war is exhausting.

It’s not that I want to die.  I really don’t.  I haven’t been in that phase of the illness for a long, long time now.   But depression years are like dog years…you live more of them in the same period of time…so fifty-three years probably seems longer to me than it would to the average, healthy person my age.  To me, I’ve already lived a really long, great, adventurous life.  Everything from here is just icing on the cake.

So what does this mean?  Well, as of today (of course things can always change which is why I’ll continue to review and update this thing regularly) but as of today, if I was mortally injured or ill and teetering on the brink of infinity, and if a possible recovery was going to mean a long, hard slog just to get back to a state of health equal to or less than what I have right now, then I’d rather take a pass on any life sustaining measures.

Please kiss me and let me go, my darlings.

Of course I’m not sure if the medical personnel involved would either agree or cooperate with that at my age…at least right away.  In fact, I’m pretty sure that in an emergency situation I’d still wind up on life support temporarily.  But then that’s exactly why I’m filling out this document right?  So that the hubster and/or the kids would be able to explain to them first, that I’m completely sincere about not wanting to be “saved no matter what,” and second, why I’m sincere, and that way eventually…gently and with everyone on board…they could remove me from life support.

Like I said, this stuff winds up being totally unique for each person doing it.  I suppose the main dictum for filling out an advance directive is, Filler Outer: Know Thyself.

A couple of other scale-tippers I discovered so far concern the issues of being a burden and/or a catastrophic financial cost.  I saw some tragic examples in hospice of how the drawn-out dying process of one spouse can not only bankrupt the surviving other, it can cripple their bodies and/or minds as well.  Occasionally, that’s just the luck of the draw and in those cases…oh well.  I can always stop eating if I feel that strongly about it (and can still think.)  But at other times it happens because of medical intervention and in that case…I don’t want to do that to him.  I DO NOT want to.  It would suck all the meaning and happiness right out of any additional life I gained if it stripped or destroyed the hubster in the process.

At this point I should mention that the advance directives we’re working with don’t offer assisted suicide as an option.  They can’t.  It’s not legal here in Idaho.  (I wonder if advance directives in Oregon and Washington include something along those lines?)  Locally, we’re only talking abut whether we want to accept or refuse “life-sustaining treatment” in extremis (from CPR to major surgeries to artificial nutrition and hydration to kidney dialysis and breathing machines…all of which can be big contributors to the election campaign of financial catastrophe BTW.)  So…no.  Not really.  Thank you.

Pass.

So, these are just a couple of examples of what we’re considering as we move through the documents.  It’s a lot more than just checking off box #1, #2, or #3.  And while I realize it might sounds pretty grim, in reality it feels surprisingly freeing to just face it.  Like these are big, unknown fears lurking just under the surface anyway, unconsciously sapping our focus and creating unease, so why not just haul them up out of the water where we can finally get a good look at them?  So far we’re finding that under the bright light of day, talking about these things isn’t horrible or morbid at all.  On the contrary, it’s a relief.  While it’s definitely emotional, it’s emotional in a kinder, braver way.  Not bad, really.

Well, this post has gotten too long.  The hubster and I are having our second go with the advance directives this weekend so I’ll try and post more about how it’s going next week.

(Next: Part VII: Advance Directives: Ours)

copyright Dia Osborn 2012

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

From The Arabian Nights by Maxfield Parrish

(This post is the fifth in a series on advance directives.  The last post was Part IV: Advance Directives: Will They Be There When We Need ‘Em?)

February is here!  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.

1)  NOT ALL FORMS ARE CREATED EQUAL.

In an earlier post I mentioned that I was planning to use our state advance directive forms.  But after downloading and looking them over I changed my mind because, unfortunately, they made me feel even more confused, uneasy, and out of control about the future than I already did.  I realized a big part of my procrastination was because I’m afraid of signing something legal that I don’t fully understand, and with the state forms?  That’s pretty much guaranteed.

I needed a form that would not only list the basic legal choices but actually explain them.  I wanted some context.

In Part III: Advance Directives: Forms and Where To Find Them I researched a variety of other options, and there were two I ultimately considered as alternatives.  The first was the Lifecare Advance Health Care Directive and the second was MyDirectives.com because they both offered the strong educational/support element I was looking for.  We eventually decided to go with Lifecare for a variety of reasons.  It was just a better fit for us.  However, a person looking for something shorter and simpler might prefer MyDirectives.com.  I’d urge everyone to check out all the options before making their own choice.

2) THESE FORMS ARE ULTIMATELY REVEALING OUR MOST FUNDAMENTAL BELIEFS ABOUT THE VALUE OF LIFE.

And I thought they were just about how to die.  Silly me. 

Far from making us uncomfortable, so far the process of filling out these forms is kind of freeing.  It’s easing that vague, horrible dread that tends to linger out around the edges. (Dare I use the word…empowering?)  It’s helping us both define the basic, essential, and worthwhile elements of life, the ones that make it worth living for us, and there’s this funny kind of anchoring feeling that happens each time either of us hits one on the head.  It’s an aha!  Like getting a shot of strength in the arm that instantly settles the butterflies and clears the eyes.  And what’s really amazing is how much that sense of anchoring lessons all the other clamoring fears like What if get hooked up anyway?  What if I lose my mind and can’t even remember what I want? What if I lose ALL CONTROL!?

That last one is the biggie of course, but it’s extraordinary how just sitting and talking about it together is helping to ease it. Which leads me to the third insight we’ve had so far:

3)  IF POSSIBLE, IT’S BETTER TO TACKLE THESE FORMS TOGETHER.

I’ve been saying all along that, no matter how good, complete, and legal the forms are, the chances of them doing much good without having conversations with the other people involved are a lot smaller.

But now I’m discovering there’s an additional…and even more profound…benefit to the hubster’s and my conversations: They’re improving the quality of our life and relationship right now.  I’m not kidding.  We’ve been together for twenty-three years and we’re learning things about one another we never knew before.  Plus, each of us is coming up with unique questions…and insights…and fears…and strengths…that the other gets to learn from, too.  The sense of alliance and trust we already had is getting deeper as we go.

We totally have each other’s backs.

4)  IT’S BETTER TO TAKE OUR TIME WITH IT.

Since the Lifecare Advance Health Care Directive is a long form with a lot of supporting information we decided to break it up over a few weeks.  We’re giving it the hour on Saturday mornings that we already committed to emergency and long-term planning (a new project that we’ve both resisted but is turning out to be remarkably productive) and we had our first sit down with the form last week.  The hubster read from the advance directive while I read from the supplemental Guide (the guide isn’t absolutely necessary but it’s VERY helpful)…and the information is, surprisingly, kind of fascinating.

It covers a lot of history, different legal and medical cases that have shaped thinking over time, medical and legal boundaries that define what we can actually ask for, definitions of what all the different terms mean, and how to bridge the gap between what lay-people tend to want and what medical people can actually do. The overall learning curve is steep but the Lifecare directive is providing a much larger context to help us understand what we’re doing and why, and this leads me to the last important point:

5)  WE DIDN’T KNOW JUST HOW MUCH WE DIDN’T KNOW.

Today’s medical technology is complex, changing, overwhelming, and often totally incomprehensible.  Even so, the hubster and I HAVE to figure out how to navigate it.  (Either that or find a cave somewhere out of ambulance-reach.)  I think most of us want the miracles modern medicine has to offer, but we’d just as soon do without the extra burden and responsibility that goes along with having them.

Unfortunately, that’s not possible.

At it’s core, modern medical technology is basically another genie in a bottle and, like any genie worth its salt, the wishes it grants us are subject to all kinds of unforeseen consequences. It’s pretty easy to wind up with a result that doesn’t look anything like what we thought we’d asked for.

The shrewd Bottle-Wishers among us (generally those with a lot of exposure to the system) have seen firsthand how unpredictable wishes can be, so they tend to think theirs through very carefully beforehand.  They ask, they learn, they craft, they plan…then they write it down.

Newbie wishers, on the other hand, mistakenly believe the genie will somehow understand what they mean however garbled or incomplete.  This, of course, makes them the ones more likely to wind up with something they didn’t bargain for.  (Tubes, drool, and paddles, my friends.)

The hubster and I would prefer to sit with the shrewdies, no matter how steep the learning curve.

I didn’t understand when I first started this project how genuinely glad I was going to be that I did.  Or how much more I’d wind up getting out of it than I’m putting in.  On the one hand, it’s taken a lot more time and energy than I’d anticipated, but it’s already paying off in some handsome and totally unexpected, dividends.

So far, so good.

Next post I’ll start talking specifics about my own choices.

(Next: Part VI: Advance Directives: Mine)

copyright Dia Osborn 2011


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

Huh oh.  Here’s an FYI post.

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

“By connecting the advance directive to an information exchange, a physician could access it without having to contact family or caregivers, or find out a patient’s login and password to current online registry programs. That connection would allow a physician to follow through on the patient’s wishes without any obligation to contact anyone.” (emphasis mine.)

Without any obligation to contact anyone?  HUH-OH.  Did the American Medical Association just toss out our right to a medical power of attorney?  Are there any doctors out there really thinking that online registries will allow them to sidestep our medical proxies, families, and loved ones? Or is this just a misunderstanding on the part of the journalist that wrote the article?

For those who don’t understand the question, here’s a little background:  There’s been a strong push by the government to make all of our medical records electronic.  (It started with Bush and received funding under Obama.)  The current goal is to have 100% of the nation’s records electronic by 2014.  (Not likely to happen that fast.)  Part of this massive effort involves establishing Health Information Exchanges, or HIE’s, at the state level, and states have already received a considerable amount of money to start setting these things up.

Enter: Advance directives that are registered online.

One of the goals for electronic medical records is to also have our advance directives available online.  States with A.D. registries are already working to connect them to the HIEs they’re setting up, and at least one private online registry, The U.S. Living Will Registry, is planning to coordinate with the HIEs.  That’s what the article is referring to when it says “By connecting the advance directive to an information exchange, a physician could access it without having to contact family or caregivers, or find out a patient’s login and password to current online registry programs.”

I’d be more inclined to dismiss this whole thing as a simple error if it wasn’t published in a news source published by the American Medical Association itself.  Could this kind of confusion exist to some extent within the medical community?  If there’s any possibility that it does then my natural inclination is towards exercising caution while some of the kinks are getting worked out of the developing electronic system and its use.

I looked around and found one possible solution. (Other than blind trust…which is not my forte.)  It turns out that, where online registries are concerned, the U.S. Living Will Registry also has an option for a Document Locator Form as an alternative to downloading the actual documents to their website.  The Document Locator Form directs a doctor or hospital seeking my advance directive to contact the people who know where it is and what it says, (i.e. my medical proxy and/or family) rather than giving them access to the documents themselves.  This creates an unfortunate hurdle for doctors trying to access my wishes, but it also provides a layer of protection during a chaotic transition to effective electronic exchanges.

My biggest fear with this is that a well-intentioned but ill-informed doctor might pull the plug on me before my family had a chance to reach my side and say their good-byes.  (While traveling for instance.)  I, personally, don’t mind hanging around a bit longer…however uncomfortable or undignified it might feel…if it gives the people I love the opportunity for that gift of closure.  I know the difference it would make for them during grieving would be profound.

copyright Dia Osborn 2011

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

Continued from Part III: Advance Directives: Forms and Where To Find Them.

If you’ve followed my little journey through the advance directive maze, you might be feeling a little overwhelmed by now.  Linda over at Rangewriter mentioned in a comment that she is.  I admit, I am.  This stuff is even more confusing and uncoordinated than I thought.  (But I’m also relieved.  At least now I know why I’ve procrastinated for eleven years.)

I felt a twinge of resentment this morning because it doesn’t seem like completing an advance directive should be this hard.  But then it hit me that one of the reasons it’s so complicated is because we’re living (and dying) in the medical wild, wild west…a vast unexplored, exciting territory with new discoveries happening every day.

A couple of pioneering ancestors of mine.

So of course the learning curve is steep.  Pioneering always involves hard work.  But it also means there aren’t any right or wrong choices yet. Just lots and lots of new ones.

The other reason this is so hard is because, to figure out what I want, I first have to know who I am, what I value most, what I (suspect I) can and can’t bear, and what kind of legacy I want to leave behind for those I love.  Then…I have to put it all into words.  That’s some heavy lifting.  Especially in a society that’s as committed to never, ever, ever thinking about this stuff as ours is.  (Talk about starting with an understanding deficit.)

Enough.  Now that I’ve identified the hurdles, onward and upward over them.

ONLINE REGISTRIES FOR ADVANCE DIRECTIVES

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:

1)  Make hard copies and hand them out.

2)  File them with an online registry, and

3)  Some blend of the above two.

In figuring out which way is best for us, here are some things we need to consider:

1)  Privacy issues.  This information is intimate stuff.  Who/how many do we really want to share it with?

2)  Security issues.  Who can we trust with this information?

3)  Confusion issues.  We need to update this information once a year or when it changes.  How do we make sure every copy out there is also updated?

4)  Accessibility issues.  How can we best ensure that the people who need this information will have it if necessary?

Hard Copies Vs. Online Registries

Privacy and Security:  Everyone’s going to have their own preferences for privacy concerning their advance directive.  Personally, while I want my specific personal information protected, I’d just as soon as many people as possible know what my wishes are.  I feel like the more people who know, the less likely it is that mistaken choices could be made.

In fact, I’m planning to include pertinent information from my advance directive in February’s posts, partly as a possible example of one way to do it, partly to stimulate some conversation, but mostly just to get the word out.  I feel pretty strongly that this is an area where secrecy is more likely to harm than help me.

Now, comparing hard copies to online registries in terms of privacy and security:  hard copies let us control how many copies and who gets them.  We can pick only the people we trust to take care of them, so there will be less likelihood of “leaks.”  These will also be the people we already have relationships with, and therefore people whom it will be easiest (and most necessary) to have ongoing conversations with.

On the other hand, every online registry has security protocols in place. (I suspect that private registries might provide better security than state registries at this point.  The current attempts to develop Health Information Exchanges are evidently creating some chaos.)

Confusion:  On the one hand, it’s harder to update hard copies, much less all the hard copies out there, as often as they might need it.  However, putting an advance directive online with a state registry now could also lead to confusion.  (Chaos link again.)  I’m rethinking my original intention to use our state registry for this reason.  At least for now.

Accessibility:  Hard copies have definite limits in the accessibility category.  Even if we’ve handed out copies to the right people, will they remember to pull them out of the file and bring them along to the hospital when they’re actually needed?  Online access promises to make our documents far more accessible in that hour of need…unless of course the computers are down.  (I don’t consider that risk unimaginable…and evidently neither do any of the online registries.  They all have disclaimers to sign stating that they’re not responsible in such an event.)

So, there are pros and cons to both hard copies and online registries, which is why I think we personally will use a blend of the two.  We’ll get a limited number of hard copies into the hands of kids and parents, and then register our documents with one of the private online registries where our other loved ones will be able to view them with the use of a private link.

Here are the web links for three different online registry services (you’re gonna have to do a little digging on your own to find your state’s registry, if that applies):

State online registries:  Only a few states have these so far.  Here’s the most recent list I could find from FierceHealthIT. 

Several states have created online advance directive registries with the intent of connecting them to statewide health information exchanges (HIEs), according to an article in American Medical News. Recently, Virginia became the latest state to take this action, joining Idaho, Montana, and West Virginia. Washington state also planned to start an advance directive registry, but had to drop that plan because of budget cuts.

U.S. Living Will Registry: Provides access to documents 24 hours per day, anywhere in the world.  Also provides a wallet ID card, labels to attach to drivers license and insurance cards, and yearly reminders to update your directive if necessary.  Also provides document access to medical personnel (of course) as well as online personal  access to registrants for viewing and updating documents.  Any advance directive form is compatible with this registry.  There are fees.

(The U.S. Living Will Registry is also planning to coordinate with the state registries of Vermont and Washington.)

America Living Will Registry:  Provides access to documents 24 hours per day, anywhere in the world.  Provides an ID card with a toll-free emergency number and web address.  Emergency medical personnel may obtain copies of your directives either on-line or via fax.   Any advance directive form is compatible with this registry, including Canadian.  There are fees.

MyDirectives.com:  Provides both medical and personal access to documents 24 hours per day, anywhere in the world.  They don’t provide an ID card to protect registrants’ security.  As I mentioned in an earlier post, MyDirectives.com is a new approach that provides a completely web-based form and registration process which promises to be a lot more user-friendly than anything so far.  They provide their own advance directive to fill out with helpful prompts and conversation starters.  Other advance directive forms cannot be used with this registry.  Their service is free.

Well, today’s the last day of January so I guess this concludes the research leg of the journey.  Time to roll up our sleeves and take the first real step.

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

copyright Dia Osborn 2011

Quick Note: Another Great Resource for Advance Directives

New resource! Thanks to Loretta over at Chrysalis who left the link in a comment on my last post about Forms and Where To Find Them.

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.  The site is worthy of a look as it has a more comprehensive list of advance directive forms and websites than the one I compiled.  (Including a Psychiatric Advance Directive designed specifically for people dealing with a mental illness. I know, I know.  Who wants more choices!?  But there it is.)

BTW, Loretta has been working with the dying for about twenty-five years and does a great job describing some of the gifts that are also available-but-usually-overlooked at the end of life.  If you’ve got the time and interest, her website is worth a look, too.

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

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

I had a lot of questions.

As I mentioned in my last post, the hubster and I are finally determined to get this albatross of planning out of our hair.  I know from my years working with hospice how complicated and overwhelming end-of-life scenarios can be and I realize that planning for it beforehand can make all the difference in the world.  So time to get it done.

First, the research:

Question:  WHAT IS AN ADVANCE DIRECTIVE?  Well, it’s even more complicated than I thought.  I’ve identified three different parts to the process so far: There are FORMS, what I call THE LETTER, and then the FOLLOW-UP.

THE FORMS

IN SPIRIT, an advance directive is a way of letting loved ones and medical personnel know what kind of medical treatment you would or wouldn’t want if you were unable to communicate those wishes for yourself.  The idea is to try and avoid confusion, mistakes, and extra suffering for everyone involved in either an emergency or end-of-life situation.

It’s a worthy ideal with almost universal backing.

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.

Turns out the whole concept of an advance directive is a work in progress.  The idea was originally conceived back in the 1960s as a result of the growing number of nightmarish dying scenarios taking place, but it didn’t start to take off in public awareness until the Patient Self Determination Act of 1990.  There have actually been three generations of advance directive forms developed over the years as our understanding of the need for them has evolved.  Wikipedia has an interesting article on the history, with specific references to the main forms created and what they were designed to address.  Reading it helped me understand why I’ve had so much trouble determining what paperwork we should use.

Basically, there’s a freaking cornucopia of advance directive forms to choose from out there.  Laws governing medical treatment for emergency and end-of-life care are actually generated state by state with a profound lack of coordination at the national level, so even if you fill out your own state’s advance directive, it’s kind of a crap shoot whether it’ll be honored if you get into trouble somewhere else.  Then there’s the other problem that most state directives (crafted by state bureaucrats) are too limited in scope to accomplish what we want them for in the first place.

In an attempt to address the latter issue, there have been even more advance directive forms created by national organizations that are more suited to deal with the subtler nuances involved, and while these other forms do a much better job of allowing us to communicate what we actually want, (and some of them have even been approved by some states) their legal strength has yet to be definitively proved in court. They’ll probably be honored, but there’s no guarantee.  And if you’re asking for any kind of treatment contrary to the state laws where you get into trouble, you’re shit out of luck.

Like I said, this stuff isn’t just scary, it’s confusing.

So what are WE personally going to do? 

Well, we’re going to fill out two kinds of advance directives: 1) our state form to cover our legal butts here at home and, 2) one of the other national forms that will help us better express the complexity of our wishes to our loved ones.  (We haven’t decided yet which one.  Needs more research.)  That second form is also necessary for us because the hubster travels extensively between states and there’s no way he’s going to fill out a separate advance directive for each one.  We’re hopeful that, in the particular states he visits, one of these other forms would almost certainly be respected.

(Panicking yet?  Don’t.  Whatever state you’re in and whatever forms you choose, the most important choice you’ll make is who you pick for your medical proxy; the person who communicates your wishes when you can’t.  Remember, the best paperwork in the world can be missed, misunderstood, and/or disregarded without your proxy there to back it up.  So don’t fixate on the form.  Fixate on the multiple, ongoing conversations you’re going to have with your proxy.)

To conclude this section on forms, the individual documents included in an advance directive can include a mixture of the following:

1)  Living Will* (name your treatments)

2)  Durable Power of Attorney for Health Care* (pick your proxy)

3)  Do Not Resuscitate Order** (please, please don’t)

4)  Choices for organ donation**

5)  POLST** (Physicians orders for life sustaining treatment) in states where it’s available.

*  always

** sometimes

NEXT, THE LETTER.

Even if somebody was to procrastinate and never get around to filling out the legal paperwork, they should at least craft their Letter and give it to their loved ones.  What is The Letter?  At it’s heart it’s something like a profession of faith; a declaration of belief about what makes life valuable to you.  It will lay out what you live for, believe in, and love; the particular things or circumstances that make your life worth living to you.

The medical choices we’re likely to face in catastrophic circumstances are impossible to predict, which makes it difficult to write down instructions for detailed treatment preferences. The purpose of The Letter is to instead provide a set of overarching principles that can help guide our proxy’s decision making.

For instance, one person might write as part of their Letter, I believe that my ability to think and communicate, to interact consciously with the world around me in a meaningful, nourishing way, defines who I am.  It’s what makes my life worthwhile to me.  Another might say I believe that I’m more than just my thoughts, actions, and will, that my life is valuable, sacred, and worth preserving simply because I exist.  While a third person might simply state Hey…if I can still talk and eat Chinese food then hook me up.  In any case, the Letter gives whoever has our medical power of attorney an idea of what’s most important to us, what the unique values and beliefs are that they need to consider when deciding on any given medical treatment.

Now FYI, there’s usually a place on most advanced directives where you can include something to this effect, but I personally would write it first as a separate document for two reasons:

1)  The space on the forms is really cramped, and

2)  You may want to communicate something of an intimate nature that you don’t want a bunch of strangers reading.

AND THEN LAST BUT NOT LEAST, THERE’S THE FOLLOW-UP.

So, I’ve now filled out both the legal documents and written the Letter.  Is that enough?  Am I now done?  Nope.  Not hardly.  Because…

1)  THESE FORMS AND WRITTEN STATEMENTS ARE UTTERLY USELESS IF THEY’RE NOT PUT INTO THE HANDS OF THOSE WHO WILL NEED THEM.  This seems kind of obvious but it’s surprising how many people miss this step, partially or completely.  The people who should have access to a copy include:

First and most importantly, whoever has our medical power of attorney!!

Second, our doctor and the hospital (if we’re in for some kind of procedure.)

Third, any loved ones and/or close friends who are likely to be involved.

Fourth, I’ll be keeping a copy with all our other important and legal documents.

We can hand out hard copies, let people know how to access the information through an online registry, or some mixture of the two.  There are pros and cons to each approach which I’ll cover in a later post. 

2)  ADVANCE DIRECTIVES NEED TO BE PERIODICALLY REVIEWED AND UPDATED.  Life goes on, circumstances change, people move or die, and our wishes for what we want evolve as we age.  It’s vitally important to make sure our documents reflect the changes.

3)  And last but not least, WE NEED TO TALK ABOUT IT WITH OUR LOVED ONES AND DOCTORS!!!

Personally, I think this task is probably the hardest one.  But folks, writing it down alone will never be enough.  We have to answer any questions and make sure everything’s clear, for both our sake and the ones we care about most. 

These are the people who will be our advocates when we can no longer advocate for ourselves, and if they don’t know what we want, or if they can’t prove that they know what we want, or if they can’t agree on what we want, then the risk rises we’ll be dying the way somebody else thinks we should.

And, man, would that suck.

These are also the people who will be shouldering a breathtaking burden of responsibility for our sakes, so we have a duty to protect them from any last, lingering doubts; from the painful question of wondering whether or not they did the right thing.

Next post: Advance Directives: Forms and Where To Find Them.

(The above photo is of U.S. Navy search and rescue students.)

copyright Dia Osborn 2011

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

It’s better when we do it together.

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.)

Well, it’s time to climb off the soapbox and dive into those cold waters like I keep telling everyone else to do.  I’ve done one thing at least…talked to the people most likely to make decisions for me if worst comes to worst…but that’s not enough.  No…ho…ho.  They’ll also need legal paperwork to prove that I mean what they say, so I need to do the deed itself.  Put pen to paper.  Download the state forms, sign on the dotted line, and give them copies.

It’s Time to Legalize And Let It Go.

The hubster is doing this with me and while we’re at it, I wanted to invite everyone else who hasn’t done their advance directive yet, but wants to (or not) to join us on our little adventure.  I’m going to try and enroll my kids and siblings and their families in the process, too, because I really want to know what they want in case (God forbid!) I wind up having to make decisions for any of them. 

IMPORTANT SAFETY TIP:  The need for an advance directive knows no age limit, anyone can wind up incapacitated and unable to make decisions at any time.  If you’re 18 or over, this sucker is a good thing to have. 

I’m assuming this process will bring up questions, fears, and insights along the way that we can all help each other with and learn from so IMHO, the more the merrier.

Are you ready to rumble?!!!

In the next couple of weeks I’ll be researching and posting about the who’s, why’s, what’s, where’s, when’s, and how’s of the process, and then in February the hubster and I will take the plunge and do all the concrete steps necessary to make sure that everyone from intimate family members to state agencies are clear on what-we-would-and-would-not-want in the event.

So if you haven’t filled out your advanced directive yet either, feel free to join us.  I figure there’s strength in numbers.

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

copyright Dia Osborn 2011